Being a caregiver for his father with Parkinson’s prepared Ethan for his own journey with the disease. Hear why he’s encouraged by current Parkinson’s research and how he is pushing to reduce disparities in diagnosis and care. 

 

Brain diseases have a life-changing impact on individuals and their loved ones. When his father was diagnosed with Parkinson’s disease, Ethan Henderson took on a caretaker role. In addition to helping his father, Ethan also educated himself about the disease and became an advocate for others. When he received his own Parkinson’s diagnosis a few years ago, Ethan felt prepared for what lay ahead.

We spoke with Ethan about how Parkinson’s disease (PD) has impacted his life, his journey to a diagnosis, his experience as a caretaker, and the brain disease research that makes him hopeful for the future.

Becoming a Caretaker for Someone With Parkinson’s Disease

When Ethan’s father was first diagnosed in 2001, his family wasn’t sure what Parkinson’s disease was. “It was all new to us,” Ethan says. “We really hadn’t heard of it, so it was time for us to dive in and learn more.” 

The family rallied together to support Ethan’s father and educate themselves about the disease. They learned that PD is a neurodegenerative disease that affects movement and is linked to a loss of dopamine, a hormone that regulates movement, memory, and other brain functions. Motor symptoms like tremor, stiffness, and slow movement are more well-known, but people with Parkinson’s also experience a range of non-motor symptoms such as voice volume issues, sleep disturbances, and memory problems.

As a caretaker, Ethan saw the impact of Parkinson’s on his father’s daily life, including not just what he struggled with but also what offered him relief. As a talented jazz pianist, his father had always expressed himself through music—and though PD impaired his motor skills, he was still able to play. 

“The only thing that would help soothe him or get him through freezing periods [a temporary inability to move brought on by Parkinson’s] was playing the piano,” Ethan says. “[He would be] sitting down and barely able to move, just one hand pounding on the keys, and after about 15 or 20 seconds, he would burst into this beautiful romantic piano music. You would never think he had Parkinson’s.”

Receiving a Parkinson’s Disease Diagnosis

Despite becoming very familiar with PD and its symptoms while caring for his father, Ethan was initially misdiagnosed when he began experiencing symptoms of Parkinson’s himself. About eight years after his father’s diagnosis, Ethan started experiencing slight tremors, which he dismissed as being due to low blood sugar. When he developed numbness in his right leg, a doctor initially misdiagnosed it as a nerve condition. Meanwhile, the tremors got worse and started to impact Ethan’s ability to walk. 

“I would drag my foot, and I tripped a number of times,” Ethan says. He finally received a correct diagnosis when visiting a pain doctor in 2016 for an unrelated issue. “When the doctor walked in, she said, ‘You know, you have Parkinson’s’—not even knowing my father had it or any familial history.” The doctor referred Ethan to a movement disorder specialist. “Sure enough, after a battery of tests, there it was,” he recalls.

Having been a caretaker for someone with Parkinson’s disease greatly impacted how Ethan handled his diagnosis. “It wasn’t shocking,” he says. “I knew I had a lifetime ahead of me, and I was just going to be smart about it.”

Finding Effective Treatments for Parkinson’s Disease

Because Ethan was caring for his father at the time of his own diagnosis, he was already aware of many of the available treatment options for Parkinson’s disease. 

In addition to medications to increase dopamine levels, there are currently a range of other drugs that target specific Parkinson’s symptoms such as freezing, cognitive difficulty, and gastrointestinal issues. Ethan has found the dopamine promoter carbidopa-levodopa to be especially helpful. This medication has been around for decades, but recent advances in Parkinson’s treatment have resulted in an improved extended-release delivery system. “I can take one and have that spread out through four hours,” Ethan says. “That really helps reduce the number of pills that I have to take, which is great.”

Ethan also emphasizes the potential for physical and occupational therapy to give people the tools they need to live a robust life. He has experienced positive results with LSVT Big, a therapy program that trains people with Parkinson’s Disease to move more normally. 

“You’re taught to use big movements, big facial expressions, big steps, big movement of the arms,” Ethan says. These large movements counteract the “shrinking” often associated with Parkinson’s and have helped Ethan when he can’t move as well as usual. “I will do some big exercises to get my muscles moving and blood flowing, and those really work,” he says.

Certain lifestyle changes can also make symptoms more manageable and potentially slow the disease’s progression. Ethan makes a point to exercise and eat a well-balanced diet to encourage optimum brain function and reduce movement and balance issues. He’s also seen positive results from meditation and mindful breathing techniques, which his wife introduced him to when he was first diagnosed. 

“Meditation and breathing [exercises] have been a real benefit for me, because they help control anxiety as well as other issues that arise day to day with this disease,” Ethan says.

Critical Parkinson’s Research and New Discoveries 

Ethan closely follows the latest brain disease research and regularly participates in PD research trials. He is particularly excited about the recent discovery of a biomarker for Parkinson’s disease. (A biomarker is a test or substance that indicates normal or abnormal biological processes or the presence of a disease or other condition.) 

“I do think this news about the biomarker—the αSyn seeding assay—jumpstarts a lot of possible therapies and new ways of diagnosing Parkinson’s,” Ethan says. “I’m mindful that it will be years before we find a way to either slow down or stop the progression, but I know there are going to be some major steps happening from that [discovery].”

Ethan also closely follows research around other treatment options like deep brain stimulation (DBS) and focused ultrasound. DBS uses electrodes placed in specific parts of the brain to create electrical impulses that affect certain brain cells or modify patterns of brain activity. It has been used to treat symptoms of several brain diseases and disorders, including tremors due to Parkinson’s. Focused ultrasound is another new technology that targets tremors and dyskinesia (involuntary and erratic movements). This non-invasive treatment uses beams of ultrasonic energy to penetrate deep into the brain, targeting specific areas without damaging the surrounding healthy tissue.

The Benefits of Support and Education

A strong support network is crucial for dealing with a challenging disease like Parkinson’s. “You don’t know what each day is going to be like,” Ethan says. “One day you can wake up feeling on top of the world. The next morning, you can barely even get out of bed. It’s just really difficult.” 

Having the love and support of family and friends helps Ethan get through those tough days. Ethan and his wife—who has dystonia, a neurologic movement disorder—always manage to find ways to assist and encourage each other through the various challenges they face in their household. 

“I’m very lucky to have my wife, who helps when I need it but is also there to nudge me along and to remind me to do my exercises or [make] sure I have a balanced diet,” Ethan says. “I also have friends and family who check in and make sure we have what we need.”

Ethan credits his prior knowledge of the disease with being able to process his diagnosis and quickly make a plan of action. He believes that educating people about the disease can offer hope to others who receive a Parkinson’s diagnosis. “It is not a death sentence,” he says. 

Disparities in Care and Advocating for Equity in Brain Health

In becoming a patient advocate for the neurodegenerative disease community, Ethan became more and more aware of existing disparities in brain health and care for marginalized communities. “The cost of Parkinson’s medication is sky high,” he says. “I’m privileged to have a wonderful benefits package, but many people without good insurance may be faced with the choice, “Can I buy my medicine or do I need to put food on the table for my family?’”

In addition to economic barriers to care, underprivileged communities have less access to specialists and facilities with specialized equipment. That means people in these communities are less likely to be correctly diagnosed and receive adequate treatment. Ethan is currently working with members of Congress and the Arizona state Senate on the National Plan to End Parkinson’s Act, a bill that will provide resources dedicated to diagnosing and treating Parkinson’s to communities across the U.S.

Ethan notes that in the past, Parkinson’s has been seen as “a white man’s disease,” but thanks to advocacy and an investment in expanding research, that is starting to change. 

“[Researchers are] really doing a fantastic job now of focusing on different backgrounds—socioeconomic as well as racial,” he says. “This allows us to learn more about the disease because research can then be more multifaceted.”

Hope for People Living With Parkinson’s Disease 

What gives Ethan the most hope for the future? Recent breakthroughs and discoveries in brain disease research—even those not directly concerned with Parkinson’s disease. “[Even] the new Alzheimer’s medication the FDA approved… gives those of us with Parkinson’s hope that there will be a breakthrough [for] other types of closely related diseases,” he says.

When researchers work together across disciplines, we are more likely to discover connections between brain diseases that lead to breakthrough insights and cures. For example, the American Brain Foundation is currently partnering with the Alzheimer’s Association, The Michael J. Fox Foundation for Parkinson’s Research, and the American Academy of Neurology to fund our Cure One, Cure Many Award for the early diagnosis of Lewy body dementia (LBD). By convening these major research partners to find a biomarker for LBD, we increase our chances of this research having a ripple effect across Parkinson’s, Alzheimer’s, and other neurodegenerative diseases. 

Only by continuing to fund research will we discover a cure for Parkinson’s and the other brain diseases that impact millions of people worldwide. Ethan wants people to know that every donation positively impacts people living with brain disease. 

“You may think that your small gift doesn’t mean anything,” he says, “but it all adds up.”

The American Brain Foundation is committed to finding cures for brain diseases. Donate today to make a difference. With your help, we can all experience life without brain disease.

Discover the most common causes of traumatic brain injury and how research is making a difference in diagnosing and treating concussions.

 

While recent coverage of traumatic brain injuries (TBI) has focused primarily on concussions in sports, brain injuries do not only affect athletes. The reality is that brain injuries can happen to anyone in the course of daily life. The most common causes of brain injuries include falls, assaults, and car accidents—and being aware of the causes and signs of a TBI may help prevent injuries or long-term complications.

Research on the causes and symptoms of TBI is vital to being able to better diagnose and treat these types of injuries. Learn about the most common causes of brain injury, how a TBI affects the brain, and how current research efforts are improving treatment and recovery.

The Effects of Traumatic Brain Injury

A traumatic brain injury (TBI) occurs when the brain experiences sudden trauma or damage, typically from a blow to the head or violent jolt, or from an object that pierces the skull. 

What happens during and after a brain injury? In the case of a traumatic impact, the sudden, jarring movement can cause nerve fibers to tear as the brain shifts position and makes contact with bones on the inside of the skull. This impact can lead to bleeding, tearing, inflammation, and brain swelling.

Symptoms of a TBI may range from mild to severe, depending on the location and extent of the damage, including:

• Dizziness
• Headache
• Confusion
• Lightheadedness
• Blurred vision
• Fatigue
• Ringing in the ears
• Personality changes or odd behavior
• Memory problems and difficulty concentrating 

In the case of a moderate or severe TBI, a person may experience nausea and vomiting, a headache that doesn’t go away, seizures, extreme sleepiness, difficulty speaking, loss of coordination, confusion, weakness, and pupil dilation. 

A TBI can also lead to long-term health issues if left untreated. Because all parts of the brain are connected, a brain injury may increase the risk of developing brain diseases like epilepsy or neurodegenerative diseases. Additionally, repeated head injuries appear to contribute to the formation of a neurodegenerative disorder called chronic traumatic encephalopathy (CTE). Researchers are currently investigating the link between CTE and TBI.

Common Causes of Brain Injury

Brain injuries can happen to people of all ages and in many different circumstances. The most common causes of traumatic brain injury are falls, motor vehicle crashes, firearm-related incidents, and physical assaults. 

• Falls are the most common cause of TBIs and occur most frequently among the youngest and oldest age groups. Falls lead to nearly half of all TBI-related hospitalizations. 
• Car accidents are the third most common cause of TBI. These may include pedestrian-involved accidents, multiple-car crashes, and bike accidents.
• Firearms are a major cause of traumatic head injuries, as in the case of a gunshot wound to the head. Firearm-related suicide is the most common cause of TBI-related death in the U.S.
• Physical assaults, including intimate partner violence and shaken baby syndrome, are common but often overlooked causes of traumatic brain injuries. TBI-related deaths in children age 4 and younger are most likely to be the result of assault. Studies also show that over 75% of domestic violence survivors suffer single or repeated traumatic brain injuries, most of which go unreported. 

Women are often underrepresented in TBI studies, but researchers are currently working to better understand the long-term impact of domestic violence on TBI. Through education and continued research, we will gain a more accurate understanding of the full scope and impact of traumatic brain injuries and learn how to better diagnose and prevent TBI.

Current Research on Traumatic Brain Injury

Ongoing research on traumatic brain injury continues to help us learn how the brain heals from various types of damage. Because early treatment is critical in the case of TBI, most current research is focused on identifying the signs of an injury and preventing long-term damage. Additionally, some studies are exploring the long-term effects of TBI so we can better understand the different symptoms associated with brain injuries, such as headache, dizziness, cognitive issues, and mood disorders.

Next Generation Research Grant Study on TBI Complications

The American Brain Foundation has funded numerous studies on the long-term impact of TBI on brain health and the links between TBI and CTE. For example, Holly Hinson, MD, MCR, FAAN, received an American Brain Foundation-funded Next Generation Research Grant in 2012 to investigate a then-unnamed syndrome that often develops in the ER following a TBI. Dr. Hinson’s study found that people who develop a fever shortly after experiencing a brain injury—specifically in the first 48 hours after a concussion—were at higher risk for developing paroxysmal sympathetic hyperactivity (also called sympathetic storming). 

Dr. Hinson’s work has expanded to study a range of factors that help doctors predict how a person may recover from a brain injury, enabling more effective post-concussion monitoring and treatment.

Advancements in Diagnosis, Recovery, and Post-TBI Care

Recent advancements in research have improved our ability to detect brain injuries and have expanded treatment options to reduce long-term complications. These methods—including eye-tracking technology using portable virtual reality, brain imaging, and biomarkers—provide more standardized ways for doctors to identify and treat TBI.

Research has also contributed to advancements in TBI treatment and has sparked a change in attitudes about how to best care for someone who has experienced a concussion. For example, research led to a more complex understanding of how exercise can reduce prolonged symptoms and speed recovery from brain trauma. This resulted in the development of the Buffalo Concussion Treadmill Test (BCTT), which has become the standard of care for treating a concussion.

Connections Between TBI and Other Brain Diseases

Some recent studies have focused on the underlying causes, signs, and risk factors of post-traumatic epilepsy to better understand links between TBI and epilepsy. If researchers could identify when people who experience a brain injury are more likely to develop a linked condition such as epilepsy, it would open the door to earlier and more effective treatment.

Because all parts of the brain are interconnected, brain health impacts a wide range of cognitive and motor functions and can be a factor in the development of a number of diseases. Knowing how to prevent, identify, and treat a brain injury is an important part of maintaining brain health, and research in this area helps us better understand how to keep our brains safe and healthy.

The American Brain Foundation knows that when we find the cure to one brain disease, we will find cures to many others. Learn more about the brain disease research we fund, or donate today to support the cures and treatments of tomorrow.

Meet our current class of grant recipients and discover how their critical brain disease research will lead to treatments and cures for the millions of people living with brain diseases and disorders.

 

At the American Brain Foundation, we invest in research across many different brain diseases because we know that finding a cure for one disease will lead to cures for many others. Our Next Generation Research Grants create a foundation for future discoveries by providing support for early-career researchers across a variety of specialties and research areas. Their vital work will pave the way for the next major breakthroughs in the diagnosis, treatment, and prevention of brain disease.

Launching Careers of the Next Generation of Brain Disease Researchers

We created the Next Generation Research Grants program to support innovative projects by today’s best and brightest early-career researchers. Critical advancements in the fight against brain disease are built on the collective discoveries of past researchers. Our Next Generation Research Grants encourage a passion for knowledge and discovery, paving the way for future breakthroughs.

To date, we have granted about $40 million to nearly 300 researchers, over 85% of whom have gone on to receive funding from the National Institutes of Health (NIH) or other major national funders. The NIH is one of the major sources of funding for brain disease research in the U.S., and it is vital to prepare early-career researchers to secure long-term funding for their projects.

We continue to fund this vital work each year thanks to our generous donors’ support, so that one day we can all enjoy life without brain disease.  

Marina Avetisyan, MD, PhD

Disease Area: ALS

FTD (frontotemporal dementia) and ALS (amyotrophic lateral sclerosis) are both neurodegenerative diseases that share similar pathology, genetics, and symptoms. Dr. Avetisyan’s project focuses on the role of neuroinflammation in both FTD and ALS and investigates why neuron death occurs in individuals with these diseases. There are few current treatments for FTD or ALS, but a better understanding of the causes of each disease will lead to more effective therapies and treatments for FTD, ALS, and potentially many other diseases.

Maurizio Grassano, MD

Disease Area: ALS

Men seem to be at an increased risk for ALS, but the reasons for this higher risk factor are not fully understood. Dr. Grassano’s project will examine the relationship between sex and genetics in the formation of ALS. This work has the potential to identify sex-specific biological factors that lead to the formation of ALS, which in turn could unlock earlier diagnosis methods and inform new, more personalized targets for drug development.

Eva Klinman, MD, PhD

Disease Area: Cognitive Aging and Age-Related Memory Loss

Despite researchers having studied neurodegenerative conditions for decades, we still do not understand what makes the aging brain prone to degeneration. Dr. Klinman’s project will examine the brains of young and old individuals to identify specific age-related changes that occur in brain cells over time. This research aims to better identify the factors that may lead aging brains to develop neurodegenerative diseases like Alzheimer’s and Parkinson’s. Discovering the specific causes of neurodegeneration would give future researchers more specific targets of investigation in learning how to rejuvenate old neurons and slow the progression of these diseases.

Sheena Baratono, MD, PhD

Disease Area: Cognitive Aging and Age-Related Memory Loss

Visuospatial dysfunction makes it hard for people to interpret what they see and respond appropriately. This is a common symptom of neurodegeneration in elderly individuals and contributes to falls, accidents, and a loss of independence. However, visuospatial dysfunction can be improved with early diagnosis and treatment. Dr. Baratono’s research will explore using clinical MRI scans to predict dysfunction and identify targets for neuromodulation treatment. Being able to intervene before visuospatial dysfunction symptoms arise would enable better treatment outcomes and raise quality of life for individuals experiencing cognitive aging. 

Wesley Kerr, MD, PhD

Disease Area: Epilepsy

Clinical trials are essential for developing new treatments for epilepsy, but they are expensive to run, proceed slowly, and require recruiting participants, which is often difficult. Dr. Kerr’s project will analyze 15 previous trials to identify ways to make clinical trials shorter. The goal of this research is to determine if the safety and benefit of a treatment can still be evaluated accurately if researchers use new, shorter parameters to guide how long participants stay on blinded treatment (where they may be receiving either medication or a placebo). 

Tanav Popli, MD

Disease Area: FTD

Primary progressive aphasia (PPA), a form of frontotemporal degeneration (FTD), causes the gradual loss of language skills as people age. Because PPA usually occurs earlier in life than other forms of aphasia, other cognitive abilities like memory and thinking often remain unaffected during the early stages of the disease. For this reason, early diagnosis and treatment is critical to reduce disability and improve quality of life—yet there are currently no proven treatments or cures for PPA. Dr. Popli’s project will use functional magnetic resonance imaging (fMRI) to test whether a form of neuromodulation called high-definition transcranial direct current stimulation (HD-tDCS) is an effective therapy to restore and preserve language skills in people with early PPA. 

Patricia Olson, MD

Disease Area: Migraine

People can have a genetic predisposition to developing migraine, but researchers do not fully understand what impact, if any, genetic factors may have on migraine treatment—specifically, which treatments work for a given individual. Dr. Olson’s project will examine how genetic variants may influence the effectiveness of monoclonal antibodies—a common preventive migraine treatment. This research may reveal biological indicators related to migraine treatment response, enabling doctors to create more tailored, personalized treatment plans.

Danwei Wu, MD

Disease Area: Multiple Sclerosis

Despite significant advancements in treating multiple sclerosis (MS) in recent years, some people don’t respond to current therapy options. A bone marrow transplantation called hematopoietic stem cell transplantation (HSCT) is being studied as a potential therapy for people with aggressive and treatment-resistant forms of MS. Dr. Wu’s research project will explore ways to make HSCT more effective and has the potential to lead to new ways to repair nervous system damage.

Dominique Popescu, PhD

Disease Area: Neurodisparities

Even with recent developments in stroke care, people who survive strokes still face many recovery challenges, including increased risk for depression and dementia. Additionally, there are disparities in how individuals experience and recover from strokes, and factors like stress, social isolation, and depression may impact the recovery process. Dr. Popescu’s project will analyze the broader factors that affect stroke severity and recovery in order to identify ways to better address these disparities in recovery and care.

Natalie Katz, MD, PhD

Disease Area: Neuromuscular Disease

We know more than ever about pediatric neuromuscular disease, but current methods of measuring treatment outcomes have not kept up with recent advances in research. To find an alternative to traditional strength-based clinical assessments, Dr. Katz will explore using imaging-based techniques to evaluate disease progression and the effectiveness of treatments. This work has the potential to provide a more accurate assessment of neuromuscular diseases like muscular dystrophy as well as better targets for treatment.

Robert Heuermann, MD, PhD

Disease Area: Parkinson’s Disease

People with Parkinson’s disease commonly experience increased pain sensitivity, but researchers are still exploring what causes this. Dr. Heuermann’s project utilizes mouse models to understand the effect of dopamine on pain signals in the brain. The project will also seek to identify changes in particular areas of the brain that process pain by examining samples from people with Parkinson’s. An improved understanding of how pain signals are processed in the brains of people with Parkinson’s disease will lead to better pain treatments not just for Parkinson’s, but potentially for other chronic pain conditions as well.

“The brain is the most complex organ in the body. Unraveling that complexity to understand how the brain works and how to restore normal brain function after [disease onset] are some of the greatest challenges of our time,” says Dr. Heuermann. “Progress is often slower than we’d like, but I truly believe we are on the verge of major breakthroughs for many of the most devastating brain diseases. I am deeply grateful to the American Brain Foundation for supporting my small part in this endeavor.”

Erika Williams, MD, PhD

Disease Area: Peripheral Neuropathy

Essential functions like blood pressure, breathing, and digestion are regulated by the peripheral autonomic nervous system (ANS), but the complex organization and anatomy of the ANS has made it difficult to study. Dr. Williams’ project will create a detailed map of important hubs within the ANS. This will aid in understanding the molecular organization of the ANS, how it is impacted by diseases, and better ways to treat dysfunction, as in cases of peripheral neuropathy.

Paula Barreras, MD

Disease Area: Peripheral Neuropathy

The inflammatory disorder sarcoidosis often leads to small fiber neuropathy (SFN), which causes chronic pain. Dr. Barreras’ project will explore the role of inflammation in SFN while working to identify factors that can better predict severity of disability caused by SFN in sarcoidosis. This research will lead to a better understanding of sarcoidosis-associated SFN and pave the way for better diagnostic tools and targeted therapies that will improve quality of life.

Margy McCullough-Hicks, MD

Disease Area: Stroke

Thrombectomy is a surgical procedure to remove blood clots from a blood vessel. It can be a highly effective treatment for stroke, but doctors can’t accurately predict which symptoms the procedure will improve. Because its benefits are uncertain, this treatment is not often offered. Dr. McCullough-Hicks’ research project will use special imaging technology to map specific stroke symptoms to particular areas of the brain, creating a resource that can be used to better predict when thrombectomy will be beneficial. This work will provide more accurate prognoses and better outcomes for people with strokes.

Next Generation Research Grants: Today’s Research for Tomorrow’s Cures

There are over 600 brain diseases impacting millions of people worldwide. By investing in today’s most promising early-career researchers, we create the foundation for discoveries that will lead to tomorrow’s treatments and cures. With the help of our donors, we can achieve our vision of life without brain disease.

The American Brain Foundation is committed to supporting the next generation of brain disease researchers. By donating today you can help us achieve our vision of life without brain disease.

For people with autism spectrum disorder (ASD), receiving an early diagnosis can be life-changing, but some populations face additional challenges in getting an accurate diagnosis at a young age. Researchers pushing for more diversity, equity, and inclusion (DEI) in autism research are working to change that.

Accurately diagnosing autism spectrum disorder (ASD) at a young age opens up access to early interventions and better treatments for children and their families. However, because women and populations of color have been underrepresented in ASD research, people in these groups often face barriers to diagnosis and care. 

As part of our commitment to addressing neurodisparities in brain health, we hosted a webinar with Audrey Brumback, MD, PhD, pediatric neurologist and assistant professor of neurology and pediatrics at the University of Texas at Austin. Dr. Brumback received a 2022 Next Generation Research Grant from the American Brain Foundation to study why Latino children are consistently diagnosed at older ages than their white peers. During the webinar, she discussed how the lack of language-appropriate and culturally relevant diagnostic tools contributes to this disparity and how a new tool for ASD diagnosis may help.

What Is Autism?

Autism is a developmental condition that starts early in life and is marked by behaviors that can impede everyday function and create challenges when interacting with others. Some common symptoms include differences in how people communicate and act socially, engaging in repetitive behaviors, having a narrow and intense focus on specific interests, and sensitivity to light, sound, certain clothing textures, or temperature. People with autism may also have different ways of moving, learning, or paying attention. ASD varies from person to person and can range from mild to disabling.

How Do We Diagnose Autism?

The diagnosis process begins with family members, a primary care doctor, or in adult cases, the individual asking for an autism evaluation. In the case of children, the child and their family are then referred to a pediatric neurologist, psychologist, or behavioral/developmental pediatrician who does an evaluation and makes a diagnosis using guidelines from the DSM-5 (the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders). 

“[Diagnosis] is based on clinical observation, caregiver report, an interview, and a series of symptoms,” Dr. Brumback says. “If you have those symptoms and the clinician doesn’t think they’re due to something else… then you will get a diagnosis of autism.” Before making a diagnosis, clinicians will also explore all the alternative possibilities for these symptoms in children, including global developmental delay (GDD) or intellectual disability (ID).

Why Is an Early Autism Diagnosis Important?

An early ASD diagnosis is crucial for creating a successful treatment plan. It also makes a big difference for family members and others who interact with an individual with autism. 

“If you know a person is autistic, it really reframes how we interpret [their] behavior,” says Dr. Brumback. For example, an ASD diagnosis can help explain why a child experiences extreme anxiety or distress for seemingly minor reasons, has an unusual intonation to their voice, or doesn’t like being in loud public spaces like restaurants.

“By identifying how somebody processes information—what are their likes and dislikes, what are the things they find challenging, what are the things they are naturally good at—we can bring that [knowledge] together to create a plan to help the person thrive,” says Dr. Brumback.

Disparities in Autism Diagnosis Criteria

ASD symptoms are often divided into two main categories: social communication and restricted, repetitive behaviors and interests. Within each category there are a wide range of stereotypical symptoms (the more apparent symptoms closely associated with ASD) and subtle symptoms. 

“In terms of cognitive inflexibility [for example], we stereotypically think of somebody who has rigid routines and intolerance to change,” Dr. Brumback says. “On the more subtle side of things can be somebody who is a true perfectionist and gets really easily frustrated when things aren’t as they need to be. This person can transition from one thing to another, but it might be very anxiety provoking for them.” 

While some medical professionals use standardized assessments, most current options are skewed toward stereotypical symptoms observed in white men and are therefore not as effective when working with other groups of people. Additionally, people who present with more subtle symptoms stand a higher chance of going undiagnosed. Dr. Brumback does not use standardized assessments and believes developing different, more inclusive assessment guidelines will help us begin to address some disparities in diagnosis.

Barriers to Early ASD Diagnosis for Latino Children

Dr. Brumback points to multiple factors that contribute to BIPOC individuals being consistently underdiagnosed with ASD, including language, cultural expectations, access to medical care, transportation, and discrimination. She notes that Latino children are historically 50% less likely to be diagnosed with ASD than their white peers. Research has identified several common reasons this happens: language barriers and a lack of culturally specific assessment criteria.

In some Latino households, one or both parents may only speak Spanish while the children are bilingual. Researchers found that these parents were less likely to notice language delays and communication issues compared to families in which parents and children all consistently speak the same language(s). “[In these cases] you don’t have the family bringing in the child and asking for a referral,” says Dr. Brumback. 

Cultural expectations can also mask some autism symptoms. “In many cultures, including many Latino cultures, making direct eye contact is considered impolite,” Dr. Brumback says. “So the fact that a child is not making good eye contact isn’t necessarily picked up on, because it’s not as striking a difference between them and [other children] developing typically.”

How Research Is Bridging the Gap for a Better Future

Creating inclusive and readily available educational resources about autism and its full potential range of symptoms can help Latino parents recognize signs and symptoms at early ages. Dr. Brumback hopes that spreading awareness will lead to more parents seeking assessments for their children. 

Advanced diagnostic tools, such as the Criteria Diagnostic Interview (CRIDI), will also make a significant impact in reducing disparities in diagnosis for people with ASD. Researchers in Mexico led by Lilia Albores-Gallo, PhD, designed CRIDI specifically for Latino families. 

“This team of professionals took the best parts of all of our English-language assessments, all of our interviews and rating scales, and translated it into Spanish,” Dr. Brumback says. “But they also redesigned it so that it was reflecting cultural differences—they wrote it using colloquial language. What they found is that this actually works really well to diagnose children.”

Following the successful use of this new tool in Mexico, Central America, and South America, the American Brain Foundation is funding research to see if it will work for Latino families in the United States. “These pilot grants that [the American Brain Foundation] offers are really transformational,” says Dr. Brumback.

The pilot study pairs Dr. Brumback with other researchers evaluating CRIDI versus routine clinical care, developmental testing, and the Autism Diagnostic Observation Schedule (ADOS). Once the pilot study in Austin, Texas is complete, the researchers plan to test their diagnostic tool on a national scale.

Focusing on DEI in autism research will lead to earlier and more accurate diagnoses for all people. Funding more studies is critical to developing better clinical assessments for diagnosis and treatment plans, and to improving quality of life for individuals with autism and their families. 

The American Brain Foundation is committed to supporting the next generation of brain disease researchers. By donating today you can help us achieve our vision of life without brain disease.

Research to help us better understand how FTD, ALS, and Alzheimer’s disease are connected will lead to more effective ways to diagnose, treat, and ultimately cure degenerative brain diseases.

 

At the American Brain Foundation, we know that when we discover the cure for one brain disease, we will cure many others. This approach to research comes from our knowledge that all brain diseases are connected. Current research in the area of neurodegenerative diseases offers a prime example of how these connections help us better understand the causes, progression, and potential treatments for a range of diseases.

Below we explore some of the connections between several types of neurodegenerative diseases that result in dementia and cognitive decline: Alzheimer’s disease and ALS-FTD spectrum disorders.

What Is Alzheimer’s Disease?

Dementia is a general term for memory loss and other serious cognitive and behavioral changes that affect a person’s daily life. There are multiple types of dementia, and different diseases can cause dementia at various stages. Alzheimer’s disease is the most common type of dementia, accounting for 60 to 80% of all cases. 

Alzheimer’s disease is characterized by progressive memory loss beyond what is expected with normal aging. It is caused by buildups of misfolded proteins in the brain, which damage the surrounding tissue and disrupt communication between the nerves in different parts of the brain. Because the primary cognitive symptoms of Alzheimer’s do not appear until well after the disease has started, it is very difficult to diagnose and treat.

What Are Frontotemporal Disorders (FTD)?

Frontotemporal disorders (FTD) are a group of neurodegenerative disorders associated with changes in the brain’s frontal and temporal lobes, which control functions related to personality, behavior, and language. People with FTD experience shrinking of these lobes, as well as the buildup of certain proteins in the brain. In some cases, FTD has been linked to genetic mutations, but more than half of people with FTD have no family history of the disease.

A person’s specific symptoms and the order in which they appear will vary from case to case, often depending on which areas of the brain are affected. Generally, changes in the frontal lobe affect behavior while changes in the temporal lobe affect language and emotions. These changes could lead to impulsive, apathetic, socially inappropriate, and/or repetitive compulsive behavior, or problems with language or loss of speech. Cases marked by primarily cognitive, language, and memory symptoms are sometimes referred to as frontotemporal dementia (also known as Pick’s disease). 

What Is ALS?

Amyotrophic lateral sclerosis (ALS) is a rapidly progressing neurodegenerative disease that attacks the nerve cells in the brain and spinal cord that control voluntary muscle movement. As these nerve cells are damaged and eventually die, they stop sending messages to muscles throughout the body, causing the muscles to weaken, twitch, and deteriorate. 

The main symptoms of ALS include muscle weakness, stiffness, and atrophy. As the disease progresses, people with ALS have difficulty standing, moving, walking, swallowing, and speaking. Eventually, they lose the ability to breathe without a ventilator.

The disease is caused by a decline in motor neuron function, but it’s not yet clear why this occurs in some people and not others. In 90% to 95% of cases, the cause of ALS is sporadic, meaning there is no clear cause, risk factor, or family history. 

Types of Dementia: FTD vs. Alzheimer’s Disease

Dementia is linked to a buildup of proteins that damage and kill nerve cells in the brain. The clumping of different types of protein lead to different types of dementia. For example, in people with Alzheimer’s, beta-amyloid proteins build up between nerve cells and tau proteins accumulate inside nerve cells. Abnormal accumulations of tau, TDP-43, and FUS proteins are commonly linked to FTD, while abnormal alpha-synuclein proteins are associated with Lewy body dementia. 

There are also some differences between the symptoms of Alzheimer’s disease and the dementia that results from frontotemporal disorders. Symptoms of FTD typically appear earlier in life—between ages 40 and 65—and Alzheimer’s disease usually develops after age 65. Memory loss is more prominent in early Alzheimer’s than early FTD. Behavioral changes are usually the first symptom of the most common form of FTD and tend to occur later in Alzheimer’s. Issues with spatial orientation are more common with Alzheimer’s, while speech problems are more common with FTD.

These similar mechanisms and overlapping symptoms create targeted opportunities for research. While different types of dementia each have their own specific causes, identifying how to treat the harmful protein buildups responsible for one of these diseases will aid in the treatment of all the others. 

The ALS-FTD Spectrum

FTD and ALS share some genetic characteristics and may share common causes in some cases. In 2011, researchers discovered that the C9orf72 gene mutation can cause both ALS and FTD, and other genes have also been identified to play a role in both diseases. Research has also found that in most people with FTD and ALS, deposits of a protein called TDP-43 accumulate in nerve cells.

Rather than two distinctly separate diseases, researchers are beginning to think in terms of an ALS-FTD spectrum, with diagnoses depending on whether movement–based or cognitive symptoms appear first.

As researchers learn more about the genetics, causes, and symptoms of ALS and FTD, those insights provide a better understanding of both diseases and can aid in the development of more effective treatments.

Can ALS Cause Dementia?

ALS itself is not known to be associated with cognitive impairment or have a direct link to Alzheimer’s disease specifically. But studies show that as ALS progresses, some people develop a form of dementia that presents as FTD. Research shows that as many as 50% of people with ALS develop cognitive and/or behavioral impairment, with 20% meeting criteria for a dementia diagnosis. The other half of people with ALS do not develop these symptoms. On the other hand, about 30% of people with FTD develop motor problems associated with ALS.

Current Neurodegenerative Disease Research

By investing in research across all neurodegenerative diseases, we increase the chances of finding key insights that will apply to more than one disease. 

The American Brain Foundation is currently funding multiple researchers looking into ALS-FTD spectrum disorders, including Marina Avetisyan, MD, PhD, and Sanjana Shellikeri, PhD. Eva Klinman, MD, PhD, is investigating the broad mechanisms behind neurodegenerative diseases like Alzheimer’s—research that may yield additional insights into the formation of FTD and other dementias.

The American Brain Foundation’s Cure One Cure Many Award supports research to find a biomarker for the early diagnosis of Lewy body dementia. Finding a biomarker (diagnostic test) for Lewy body dementia would help distinguish it from other dementia disorders and offer clues for effectively diagnosing diseases like Alzheimer’s and FTD.

As we pursue research into ALS-FTD and Alzheimer’s disease, we have the potential to contribute to greater breakthroughs across many different neurodegenerative diseases. These research insights will lead to new or improved treatments, better diagnosis methods, and ultimately cures for a range of brain diseases.

The American Brain Foundation knows that when we find the cure to one brain disease, we will find cures to many others. Learn more about the brain disease research we fund, or donate today to support the cures and treatments of tomorrow.

This August, in recognition of Spinal Muscular Atrophy Awareness Month, we are highlighting some of the most recent advancements in SMA and neuromuscular disease research. 

At the American Brain Foundation, the philosophy of “Cure One, Cure Many” guides our investment in research, because we know all brain diseases are interconnected. This means research discoveries for one brain disease have the potential to advance the diagnosis and treatment of other diseases. We can see some exciting examples of Cure One, Cure Many in action in the recent groundbreaking gene therapy for spinal muscular atrophy (SMA) that is now fueling similar research into other neuromuscular diseases.

Learn about some of these recent breakthroughs in diagnosing and treating SMA, and how breakthroughs in gene therapy for SMA are helping researchers make progress across other neuromuscular disease areas.

What Is Spinal Muscular Atrophy?

Neuromuscular diseases affect the peripheral nervous system, which is made up of the nerves that connect the brain and spinal cord to the rest of the body. These nerves control voluntary muscle movement and communicate sensory information to the brain. Spinal muscular atrophy (SMA) is one type of neuromuscular disease, but other common types include amyotrophic lateral sclerosis (ALS), muscular dystrophy, and myasthenia gravis.

SMA is a progressive, hereditary disease that damages and destroys nerve cells in the brain and spinal cord. When these nerves are damaged, it affects a person’s ability to move the muscles in their arms, legs, face, chest, and throat, as well as their ability to speak, walk, breathe, and swallow. Over time, the muscles weaken and decrease in mass, and a person may develop twitching in certain muscles due to the breakdown in communication between peripheral nerves and the brain.

The most common form of SMA can be classified into four types. These types—designated I through IV—are distinguished by the degree of impairment to a person’s mobility, the age of disease onset, and the severity of symptoms.

Caring for someone with SMA often involves helping to manage breathing, nutrition, movement, and daily activities. Caregivers may also organize physical and occupational therapy sessions, assist with stretching and strengthening exercises, and offer help with special ventilation equipment or assistive devices like wheelchairs and braces.

Are Any Types of SMA Treatable?

Most treatments for SMA include medications and therapies to manage symptoms and prevent complications. However, recent research led by Jerry Mendell, MD, FAAN, 2019 recipient of the American Brain Foundation’s Scientific Breakthrough Award, uncovered a one-time treatment for children with Type I SMA, developing the first cure for what is otherwise a fatal disease. 

Dr. Mendell’s research used gene therapy to develop the new treatment, building on a relatively new research area. The world’s first gene therapy treatment was developed in 1990, laying the foundation for this breakthrough in SMA treatment and many others. Gene therapy now shows promise for treating a range of other diseases for which there is no other cure. 

Additionally, research has improved the diagnosis of SMA by uncovering new ways to screen for the disease, in turn allowing for earlier treatment. “The diagnosis and treatment of SMA have dramatically changed over the past years through a combination of newly introduced medications and newborn screening,” says Stefan Nicolau, MD, recipient of a 2022 Next Generation Research Grant from the American Brain Foundation. 

“Previously, babies with SMA were typically diagnosed around 2 to 6 months of life and the vast majority died before their second birthday,” says Dr. Nicolau. “Now, most babies are diagnosed in the first week or two of life and receive early treatment, which allows most of them to reach milestones that would never have been possible without treatment.”

How Advancements in SMA Treatment Are Fueling Other Neuromuscular Disease Research

Dr. Mendell’s model for using gene therapy to treat SMA is now helping to guide the development of similar therapies for other neuromuscular diseases, such as Duchenne and limb-girdle muscular dystrophy and ALS.

“SMA has in many ways been at the forefront of therapeutic development for inherited neuromuscular disorders,” says Dr. Nicolau.

Dr. Nicolau’s own research focuses on developing new ways to use gene therapy to correct the genetic mutations that cause Duchenne muscular dystrophy (DMD). He hopes this research will be a first step toward bringing genome editing for DMD into clinical use. Other studies are underway as well—for example, current American Brain Foundation-funded researcher, Samuel Carell, MD, PhD, is investigating applications of gene therapy for neuromuscular diseases like myotonic dystrophy (DM). 

“The development of gene therapy has transformed SMA care, and there are at the moment numerous gene therapies in development for other neuromuscular disorders,” says Dr. Nicolau. “I expect that a number of these will reach clinical trials and even receive approval in the coming years.”

Advancements in the diagnosis and treatment of SMA are important because they can help researchers find more effective treatments and cures for other neuromuscular diseases. Research is the only way to make progress in detecting, treating, and curing brain disease. 

In honor of Spinal Muscular Atrophy Month, we hope that you will join us as we continue to invest in this critical research. With your help, one day we will all be able to live without brain disease.

The American Brain Foundation was founded to bring researchers and donors together in the fight against brain disease. Learn more about brain disease or make a gift to support groundbreaking brain disease research.

New treatments for Alzheimer’s offer hope for people living with dementia—but these new drugs are not without side effects. Learn what a neurologist has to say about what these new medications mean for the future of Alzheimer’s treatment.

Brain diseases like Alzheimer’s and other dementias have a devastating impact on individuals and their families. Recent research has led to advancements in diagnosing and screening for Alzheimer’s disease as well as a new class of drug treatment options that offer hope of halting disease progression. But how safe and effective are these therapies, and who can use them?

We hosted a webinar to explore recent advancements in the diagnosis and treatment of dementia and address questions around this new class of drugs. Ronald C. Petersen, MD, PhD, director of the Mayo Clinic Alzheimer’s Disease Research Center and the Mayo Clinic Study of Aging, discussed the current state of Alzheimer’s research, advancements that may lead to earlier detection and treatment, and what this means for people with dementia.

Changing Terminology Around Dementia

Much like our understanding of neurodegenerative brain diseases, the terminology used to discuss dementia has shifted over the years to become more accurate and fully encompass the many different ways symptoms may appear. 

“When I started in the field decades ago, someone would come in with a memory complaint and we’d classify them as either cognitively normal or possibly having dementia,” Dr. Petersen says. “But over time, we came to appreciate that this is a broader continuum… There are no hard [boundaries] between these various conditions [that may cause cognitive decline].” 

Dr. Petersen and his peers realized there is an observable stage of cognitive decline that occurs between normal aging and the onset of dementia—a condition they now call mild cognitive impairment (MCI). People with MCI have memory issues beyond those associated with normal aging but can still keep up with daily functions. Recognizing and diagnosing this condition is vital because it enables people to get earlier and potentially more effective treatments to delay the onset of dementia.

Blood Tests for Alzheimer’s Disease

The last few years have seen remarkable progress in Alzheimer’s research, including efforts to develop blood tests to detect the disease. These blood tests are designed to measure a biomarker (a biological indicator) that shows when the underlying causes and mechanisms of a disease are present. The goal is to accurately detect the misfolded amyloid-beta and tau proteins that cause Alzheimer’s and measure the amount of these harmful proteins in a person’s blood at any given time. 

“Blood tests have been developed and have been refined to really characterize a person’s amyloid level based on their blood test,” says Dr. Petersen. “These need further refinement, but that’s one direction in which the field is moving.”

These blood tests are significant for several reasons. First, they can identify when someone is in the early stages of Alzheimer’s disease, enabling earlier treatment and interventions to slow the progression of the disease. Secondly, this type of testing will allow researchers to measure the effectiveness of different drug treatments by identifying whether they lower the amount of amyloid-beta and tau in the brain. Thirdly, they will give researchers easier, quicker access to data from underrepresented groups of people with dementia. 

“One of the legitimate criticisms of clinical research [and drug trials] in Alzheimer’s disease and dementia is that they have largely involved higher educated, higher socioeconomic class, often white individuals,” says Dr. Petersen. “Blood tests will now give us access to the biologic characteristics [and] the diagnostic features of individuals from underrepresented groups.”

New Alzheimer’s Drug Treatment Options

Thanks to new research, there is more hope than ever before for effectively treating Alzheimer’s disease. Dr. Petersen explains that there are currently two types of drugs for Alzheimer’s disease: symptomatic and disease-modifying. 

“The symptomatic drugs have been around for literally decades now,” he says. “They’re helpful at perhaps alleviating some of the symptoms of Alzheimer’s disease for a period of time, but they’re not getting at the disease process [to slow or stop progression].”

Disease-modifying therapies target the underlying causes of Alzheimer’s to slow the progression of the disease. “What’s been exciting in the last few years has been the development of disease-modifying therapies,” says Dr. Petersen. “There have been three drugs now that have demonstrated positive results in clinical trials.” 

Those drugs are aducanumab, lecanemab, and donanemab, and all three focus on removing or preventing amyloid-beta protein buildup in the brain.

Aducanumab

As the first new Alzheimer’s disease treatment since 2003, aducanumab was the first in this new class of drugs to target the harmful buildup of amyloid protein in the brain. Aducanumab made waves when the FDA granted it accelerated approval in 2021—but while some people were thrilled about its approval, others expressed concerns. Some medical experts felt the results of clinical trials were unclear and that the possible complications of using the drug outweighed its benefits. The maker, Biogen, is currently conducting a post-approval trial to confirm clinical benefits.

Lecanemab

Lecanemab was granted accelerated approval in January 2023. Its makers, Eisai and Biogen, conducted a study that showed promising results. “In this study, they demonstrated that lecanemab did in fact slow progression of the disease by about 27% at 18 months,” says Dr. Petersen. 

“When you look at the biological impact of the drug on the disease, [it] shows remarkable lowering of the amyloid level in the brain. So it does what it is supposed to do, and in fact, it appears to have a clinical impact.” The FDA granted full approval to Lecanemab in early July 2023. 

Donanemab

Donanemab was also granted accelerated approval in January and is currently undergoing additional clinical trials by its maker Eli Lilly. In donanemab’s early trials, the drug slowed the progression of Alzheimer’s disease by 35%. 

“Importantly, 72% of the participants in the study had their amyloid levels reduced to negative by 18 months,” says Dr. Petersen. “Now we’re getting a trend that the more amyloid you remove from the brain, the more likely you are to see clinical stabilization or a lessening of the rate of progression.” 

Donanemab is still awaiting full FDA approval.

Drawbacks to Alzheimer’s Disease Drugs

One of the major controversies around these new Alzheimer’s treatments is whether the benefits outweigh the risks of possible side effects. 

“The bad news is, there are side effects of these drugs,” says Dr. Petersen. “These drugs that lower amyloid levels have the risk of producing some swelling in the brain (edema) or possibly bleeding in the brain (hemorrhage).” 

Eisai’s lecanemab trial revealed there was a 12.5% rate of edema versus the placebo rate of 1.7% and a hemorrhage rate of 17% versus the 8.7% placebo rate. Donanemab showed even higher risks: a 24% edema rate compared to 6.1% for the placebo group, and a 31.4% hemorrhage rate compared to 13.6% for the placebo group. 

“About three-quarters of the people who have these imaging abnormalities are asymptomatic,” says Dr. Petersen. “But a quarter of them did have various symptoms: headache, dizziness, confusion. So the drugs are effective, but they may not be completely [harmless].”

The price and accessibility of these drugs are another concern for many people. Lecanemab is estimated to cost about $26,500 a year. Medicare officials have said they will cover the drug now that it has received full FDA approval—however, there is a caveat. “They’re operating under what’s called a National Coverage Decision, which they put in place last year, saying that if these drugs are approved by the FDA, we’d like to learn more about them, we’d like to collect more data, and we’d like people who get these drugs covered by us to be in a registry,” says Dr. Petersen. 

While Dr. Petersen thinks data collection is a good idea, he’s concerned that a registry may result in fewer people from marginalized groups accessing the drugs. “The requirement of a registry may enhance or amplify that disparity,” he says. “Physicians who treat patients from underrepresented groups may not be quite as willing to go through all the paperwork.”

A Hopeful Future for Dementia Treatment

While these new drugs don’t cure Alzheimer’s or other dementias, they can preserve a person’s cognitive function for longer, giving people more time to spend with their families and enjoy their lives. “If you can keep me where I am at now for another nine or 12 months, is that important? I think most people would say yes,” says Dr. Petersen.

Right now, the drugs are used for people with MCI and mild dementia due to Alzheimer’s disease. However, there may be potential to use them as early intervention measures to prevent symptoms while the disease is in its earliest stages. 

“The real strategy would be, let’s move back up that continuum [of cognitive decline],” says Dr. Petersen. “Now that we have these imaging biomarkers and spinal fluid biomarkers, maybe blood biomarkers, shouldn’t we treat people who are cognitively normal but have the biologic features of Alzheimer’s disease?” There is currently a trial underway using lecanemab to explore this possibility.

After so long with limited options, people with Alzheimer’s disease finally have hope for treatments that can significantly improve their quality of life and allow them more time with the people they love. With further research, we will uncover even earlier and more effective treatment options not just for Alzheimer’s, but for all neurodegenerative diseases.

The American Brain Foundation was founded to bring researchers and donors together in the fight against brain disease. Learn more about brain disease or make a gift to support groundbreaking brain disease research.

This year, World Brain Day brings awareness to the topic of brain health and disability in order to improve access and reduce gaps in equity.

World Brain Day (WBD) was established by the World Federation of Neurology in 2014 with the goal of increasing public awareness and promoting advocacy around an important topic in neurologic health each year. This year, World Brain Day is on Saturday, July 22, and will focus on brain health and disability.

On World Brain Day, people across the world are encouraged to come together and promote awareness of important topics in brain health. By shining a light on brain health, WBD encourages people to take action on an individual, community, and global level. This push for more education and awareness also emphasizes the importance of funding research to uncover connections between brain diseases and deepen our understanding of diagnosis and treatment.

Brain Disease and Disability

This year’s theme of brain health and disability brings attention to the many people with neurologic disabilities around the world and aims to inspire a global initiative to close the gaps in disability education and awareness.

People with disabilities due to brain diseases and disorders often face barriers to accessing the health care they need. To break down these barriers, World Brain Day is focused on five key aims: prevention, awareness, access, education, and advocacy. Through action in these five areas, we will take steps to reduce disability associated with brain diseases, achieve universal access to care and treatment, and increase equity.

Disparities in Neurologic Care

According to the World Health Organization, neurologic conditions are the leading cause of disability adjusted life years (DALYs). Individuals with disabilities face many different challenges, including stigma, discrimination, and social exclusion, and these challenges can prevent people from receiving the care they need. This year’s WBD initiative shows that with a coordinated global effort, we can make the world more accessible and equitable for all—so that when it comes to brain health, no one is left behind.

“This is our chance to show up for people with disabilities that stem from neurologic diseases and create a global effort to break down barriers that prevent them from achieving the highest possible standard of health that everyone deserves,” says David Dodick, MD, Emeritus Professor of Neurology at Mayo Clinic and World Brain Day Co-Chair. “So many of these individuals face stigma, discrimination, and lack of access to professional care and rehabilitation that can change their lives.”

One way we can work to reduce the global burden and disability of brain disease is to increase support and funding for research that will close the current gap in care. With a better universal understanding of brain health, we can make a difference for individuals with disabilities and develop better treatments for everyone impacted by brain disease.

How Brain Disease Causes and Contributes to Disability

There are a range of different ways that brain diseases and disorders create undue burden for individuals and their families. One area where we see a growing global burden is the impact of neurodegenerative diseases on a growing elderly population in the coming decades. Diseases like Alzheimer’s and Parkinson’s often require increasing levels of care as individuals age, which creates additional, unforeseen financial and emotional stress for their loved ones.

For many people, brain disease leads to a degree of disability that creates a need for significant care. For example, people living with movement disorders often require caregivers, adaptive home equipment, transportation, and other resources. Additionally, many brain diseases can cause disabilities that limit a person’s ability to work, which in turn affects their financial stability and mental health. 

We are also learning more and more about the potential for long-term disability caused by traumatic brain injuries (TBI). Researchers are currently working to better understand how repeated concussions and other head injuries can lead to chronic traumatic encephalopathy (CTE), dementia, and other disabilities. Single severe head injuries can also result in lifelong disability. For someone like Courtney Fraser, who experienced a TBI at the age of 4, the long-term impact of this injury on her memory and mood is an ongoing part of her daily life.

Building awareness, sharing educational resources, and funding research will help ease the financial and emotional burden of brain disease for individuals and their families.

The Importance of Research

At the American Brain Foundation, we know the only way to ease the burden caused by brain disease is by investing in research across the whole brain. Only through continued research will we find the treatments and cures we need to reduce disability and support people living with brain disease. 

Researchers have made significant advancements in treatment in recent years, such as wearable technology for reducing disability caused by brain disease. However, while we’ve seen incredible progress, so many vital research projects still go unfunded every year. In fact, the American Brain Foundation is only able to fund 25% of the applications for research projects we receive. That means 75% of potentially life-saving research projects are going unfunded, leaving millions of people without treatments, cures, and answers.

We can all do our part to spread awareness and lighten the global burden of brain disease. If you want to take action in honor of World Brain Day this year, donate to fund critical brain disease research, join the Brain Squad, or learn about other ways to give.

Stay updated on the latest news from the American Brain Foundation by following us on Twitter and Facebook. Only through research will we find cures for all brain diseases and disorders. Donate today to make a difference.

A new documentary shines a light on the links between traumatic brain injury (TBI) and domestic violence. This Hits Home features stories from survivors of domestic violence and researchers investigating how repeated TBIs lead to lifelong neurologic impairment, including dementia and a neurodegenerative disease called chronic traumatic encephalopathy (CTE).

Millions of women experience traumatic brain injuries (TBI) due to domestic violence (DV) every year. While in recent decades researchers have begun studying the long-term impact of repeated TBIs on athletes and veterans, the relationship between TBI and domestic violence remains critically under-researched.

This Hits Home, a powerful new documentary from award-winning actor and director Sydney Scotia, shines an unflinching light on the experiences of women impacted by domestic violence. In addition to testimonials from survivors, the documentary features doctors discussing the latest research on the connection between TBI, life-long changes in memory, mood, and other cognitive functions, and a degenerative brain disease called chronic traumatic encephalopathy (CTE). For many survivors of domestic violence, the impact of TBI on thinking and memory lasts long after the abuse ends.

We spoke with Scotia about making the documentary, the importance of research in increasing our understanding of TBI and CTE, what can be done to support survivors of domestic violence, and more.

Content Warning: The below trailer and this article contain discussions of domestic violence.

The Domestic Violence Hotline offers free and confidential 24/7 support at:

• 1.800.799.SAFE (7233)
• Text “START” to 88788
• Chat with someone confidentially at https://www.thehotline.org/

Watch the trailer for This Hits Home.

From Conversation to Film: The Making of This Hits Home

This Hits Home has been long in the making for Scotia. “After bringing a donation to a domestic violence shelter when I was younger, I was devastated to learn about the sheer number of women hiding in silence with concussions or TBIs,” she says.

Wanting to draw attention to the complicated, lifelong impact of domestic violence, Scotia began interviewing medical professionals, policymakers, and survivors about domestic violence-related TBI (DV-TBI).

“By making this documentary, I was aiming to break the silence on a hidden epidemic to generate awareness and bring to light the reality of DV,” Scotia says. “I wanted to empower women who are safe and ready to share their stories, leading people to action on both a personal and societal level.”

Scotia’s connection with the many brave survivors she interviewed over the course of six years led to the creation of This Hits Home. “At the end of the day, I felt a responsibility to all of these people who are working so hard to raise awareness for DV-TBI,” Scotia says. “I felt a responsibility to have their stories heard because they were so generous to share their stories with me.”

The Silent Epidemic of DV-TBI

One in four American women will experience severe violence from a domestic partner in their lifetime, often resulting in significant trauma to the head and neck. Over 75% of domestic violence survivors suffer single or repeated traumatic brain injuries, most of which go unreported. Despite these alarming statistics, DV-TBI is still critically under-researched.

“I don’t think the connection [between TBI and DV] has been made on a wide scale,” Scotia says. This is due in part to the lack of awareness and education about the signs and symptoms of TBI, particularly with regard to instances of domestic violence.

“Few law enforcement and medical professionals think to ask about concussions when showing up to the scene of a domestic dispute or when a woman walks into the ER, and many survivors don’t know to think about that, either,” Scotia says. “Everyone is focused on the visible injuries—we’re not so focused on the invisible injury, which is TBI.”

Talking about domestic violence is difficult, and many women may struggle to share their stories due to stigma, the threat of partner retaliation, and lack of accessible medical care. Raising awareness of the signs of domestic abuse can help more women come forward and receive the care and support they need—but the right systems must be in place for that to happen.

“Until there are major institutions set up to help victims of DV, I don’t think we’re going to have completely accurate data [about the impact of TBI],” Scotia says. “People aren’t going to want to report their situation or know what to do if they’ve suffered a concussion if there is no system in place to help them.”

How Domestic Violence Affects the Brain: TBI and CTE

Repeated TBIs can lead to a fatal, incurable neurodegenerative condition known as chronic traumatic encephalopathy (CTE). Research on CTE often centers on military service members and professional athletes due to the high rates of TBIs these groups experience. However, there is a significant research gap when it comes to survivors of domestic violence who are at increased risk for this devastating condition.

“Symptoms of CTE can include memory and thinking problems, confusion, personality changes, erratic behavior, depression, and aggression,” Scotia says. “CTE can lead to impulsive and aggressive behavior, sometimes contributing to a cycle of abuse—and it can only be diagnosed after death.”

The cycle of abuse is explored in This Hits Home with María Garay-Serratos, MSW, PhD. Dr. Garay-Serratos’ mother was a victim of domestic violence at the hands of her father, who was himself a victim of his own father’s violence. Years later, Dr. Garay-Serratos connected the two events to chart how DV-TBI directly contributes to the overall cycle of abuse.

Scotia hopes the documentary will help break this cycle by prompting more research to increase our understanding of DV-TBI and CTE, as well as fueling awareness efforts to better support DV survivors. “My main goal for This Hits Home was to start a global conversation around and ultimately eradicate domestic violence,” Scotia says. “If we’re able to talk more openly about DV, my hope is that all relevant stakeholders will be activated and mobilized to inspire and effect change.”

The Importance of Research and Advocacy

We know that all neurodegenerative diseases are connected and that research discoveries in one area will lead to insights, treatments, and cures in others. “One of the goals of making this documentary was to encourage far more research,” Scotia says. “Over the past six years of making this film, I’ve seen more articles [about DV-TBI] published. I’ve been happy to see a little bit more awareness around the topic, but right now, we definitely don’t know enough.”

This Hits Home highlights one research goal that will accelerate our understanding of how to diagnose and treat DV-TBI and CTE. “We need women’s brain banks,” Scotia says.

Brain banks collect brain and tissue samples from donors after their death, distributing these samples to researchers and labs across the United States. However, current brain banks do not have enough samples from women with documented histories of DV-TBI and CTE, making it difficult to research the link between the two.

“It seems obvious that women who suffer repeated TBIs from DV are going to get the same neurodegenerative brain diseases as men,” Scotia says. “But it’s hard to distinguish whether Alzheimer’s disease, CTE, post-concussion syndrome, multiple mental health struggles, or another disease or condition is the main issue for them. Add the fact that nobody wants to talk about DV, and we’re getting very little research on women’s brains.”

In addition to funding research to better understand the connections between DV-TBI and CTE, people can support survivors by educating themselves about the signs of domestic violence and TBI. Spreading awareness about DV-TBI requires active, empathetic listening. “Rallying support for survivors, advocating for policy changes, or simply reaching out to a friend are all ways people can get involved,” Scotia says.

You can rent or buy This Hits Home today by clicking here.

The American Brain Foundation is committed to finding cures for brain diseases. Donate today to make a difference. With your help, we can all experience life without brain disease.

The new discovery provides a tool for the early diagnosis of Parkinson’s disease.

In April, new research marked an important breakthrough in understanding Parkinson’s disease. An international group of scientists led by The Michael J. Fox Foundation has discovered a biomarker for Parkinson’s disease. This biomarker can now serve as a tool for early diagnosis of Parkinson’s disease, including for people who do not yet show symptoms.

What is a biomarker and what does this mean for Parkinson’s disease diagnosis?

A biomarker is a measurable biological substance found in the blood, tissues, or bodily fluids. Biomarkers are used to indicate normal or abnormal biological processes or the presence of a disease, infection, or other condition. The form a biomarker takes may range from a gene found in one’s DNA to a protein or hormone detected in the bloodstream. 

In this case, researchers have developed a tool—called the α-synuclein seeding amplification assay (αSyn-SAA)—that can identify the presence of an abnormal protein in the brain and body that is a known indicator of Parkinson’s disease. By finding a biomarker for Parkinson’s, researchers and doctors will be better able to detect who has the disease or has a high risk of developing it, leading to earlier diagnosis and treatment.

What is the alpha-synuclein protein?

This recent research confirmed that the αSyn-SAA tool accurately identifies the presence of abnormal alpha-synuclein protein, sometimes referred to as the “Parkinson’s protein.”

The alpha-synuclein protein is normally found in the nervous system, both in the brain and throughout the rest of the body. In people with Parkinson’s, the protein begins to misfold and clump, similar to the amyloid protein in Alzheimer’s disease. The protein buildups caused by these abnormal alpha-synuclein proteins damage brain cells and disrupt communication between the neurons in the brain and the rest of the body, causing the various symptoms of Parkinson’s disease.

“We’ve never previously been able to see in a living person whether they have this alpha-synuclein biological change happening in their body,” says Todd Sherer, PhD, chief mission officer at The Michael J. Fox Foundation (MJFF). Being able to detect this before symptoms even begin to show is a groundbreaking step forward in diagnosis and treatment. 

How does the new tool work?

The αSyn-SAA tool can detect abnormal alpha-synuclein protein in spinal fluid—both in people who have been diagnosed with the disease and in people who have not yet developed symptoms.

How does the assay tool work? First, researchers prepare a spinal fluid sample by adding a solution that contains a fluorescing agent—a substance that will light up in the presence of certain chemicals or conditions. In this case, the solution will light up if clumps of alpha-synuclein proteins start to form. 

The test works based on researchers’ prior knowledge that abnormal alpha-synuclein proteins cause nearby healthy proteins to misfold and clump. After preparing the sample, researchers introduce normal alpha-synuclein to the spinal fluid, and if abnormal proteins are present, they will cause the normal proteins to clump and the fluorescing agent will light up. If the sample doesn’t contain abnormal alpha-synuclein proteins, the newly introduced healthy proteins will not clump and the agent won’t light up.

The test indicates the presence of abnormal alpha-synuclein protein with incredible accuracy. Researchers found that 93% of people with Parkinson’s who participated in the study were shown to have abnormal alpha-synuclein protein based on the assay test. The test showed false positives in less than 5 percent of people without Parkinson’s who participated.  

This discovery is especially significant because the assay was validated on a large group of spinal fluid samples, and very few tests for neurologic disorders are more than 90% accurate.

The Benefits of Early Diagnosis and Treatment

In recent decades, research has made significant strides in improving diagnosis and delaying disability for people with Parkinson’s. “When I started in the field, we would think in terms of people having considerable problems 5 to 10 years after diagnosis,” says Lisa Shulman, MD, director of the University of Maryland Movement Disorders Center and a neurologist specializing in Parkinson’s disease. “Today it’s quite common to see people who are 15 or more years after diagnosis who live active lives—not to say asymptomatic, but they’re able to maintain a good lifestyle in many cases.”

The new αSyn-SAA tool joins prior tools like the Syn-One Test—which identifies the presence of abnormal alpha-synuclein via a skin biopsy—and subjective clinical assessments. Technology like the αSyn-SAA tool will enable doctors to use an objective measure to identify people in the earliest stages of Parkinson’s disease. Early detection leads to earlier, more targeted treatments, making them more effective in delaying the onset or slowing the progression of disease. This research offers hope that in the future, individuals with an early diagnosis could avoid developing more advanced symptoms.

The Importance of Research

This recent discovery has been deemed a “game-changer” because it opens up opportunities for future research breakthroughs. For example, further research may be able to optimize the biomarker test to measure how much alpha-synuclein is present or find a way to test for the abnormal protein through a blood draw, skin biopsy, or nasal swab. It also has the power to accelerate clinical drug trials and research on better treatments for Parkinson’s disease.

The American Brain Foundation is currently working with The Michael J. Fox Foundation to fund similar research to identify a biomarker for Lewy body dementia. Lewy body dementia is a disease with a similar pathology to Parkinson’s and Alzheimer’s—it is also caused by a buildup of misfolded proteins. When there is a breakthrough in detection or treatment for one of these diseases, those insights can often be applied to research on related diseases as well. 

Because of these connections, funding research across disease categories can lead to greater innovation and better treatments. The Foundation’s approach of “Cure One, Cure Many” highlights the understanding that a cure for one brain disease can lead to a better understanding of other diseases—and ultimately more cures. 

The American Brain Foundation knows that when we find the cure to one brain disease, we will find cures to many others. Learn more about the brain disease research we fund, or donate today to support the cures and treatments of tomorrow.

Ruth was diagnosed with a rare movement disorder called orthostatic tremor (OT). Below, she shares her story to spread awareness, encourage more research, and help others who suffer from this debilitating condition.

Ruth Hochheiser always led an active life—she raised children, worked, played sports, and went to the gym almost daily. A few years into retirement, she realized something was wrong with her legs when she could no longer stand comfortably for extended periods. After four years of doctor’s appointments and searching for answers, Ruth was finally diagnosed with a rare movement disorder called orthostatic tremor (OT). Because OT is so rare, very little is known about the disorder, making it difficult to diagnose and often even harder to treat effectively.

We spoke with Ruth about her journey to get a diagnosis for OT, the difficulty of finding treatments, and the importance of funding research on movement disorders. Read her full story below.

What Is Orthostatic Tremor?

Orthostatic tremor is a rare movement disorder characterized by rapid muscle tremors in the legs and sometimes the torso. It occurs when standing still, disappears or lessens when a person is walking or sitting, and causes unsteadiness, exhaustion, pain, and muscle stiffness. In many people, the severity of tremors worsens over time, eventually requiring the use of mobility aids. Getting an OT diagnosis requires a clinical exam and a specialized test that measures electrical activity in the muscles. While the cause of OT is unknown, doctors believe it results from the brain incorrectly regulating nerve signals that control muscle activity.

Appearance and Progression of Symptoms

After a few years of playing in an orchestra, Ruth noticed something wasn’t right with the feeling in her legs. As a percussionist, she was required to stand for long periods of time. While this hadn’t been an issue previously, it was slowly becoming a problem. 

“I noticed I couldn’t really stand for that long without sort of marching my legs… I just couldn’t stand still,” Ruth says. After attending an awards ceremony for a friend and realizing she could not stand and socialize afterward, Ruth knew she needed to seek help.

In 2014, she began her search for a diagnosis. In addition to seeing her primary care physician, she went to an orthopedist, multiple physiatrists (doctors that specialize in physical medicine and rehabilitation), and a neurosurgeon. No one could determine what exactly was wrong, and while several doctors had suggested different potential treatments, these weren’t helping reduce her symptoms. 

Meanwhile, Ruth’s condition was getting progressively worse. She could no longer do household chores and other activities that required standing for significant periods of time. Eventually, Ruth saw a neurologist who suspected she had a movement disorder and referred her to a specialist. She was finally diagnosed with OT in 2018.

As Ruth discovered firsthand, it’s challenging to get a correct diagnosis for orthostatic tremor for several reasons. Orthostatic tremor shares symptoms with a number of other movement disorders, but unlike with diseases like Parkinson’s, the tremors caused by OT cannot be detected visually. The lack of research and awareness about OT also made it difficult for Ruth to find information about her condition, and she discovered that many doctors are not familiar with the signs and symptoms.

Treatment and Medications for Orthostatic Tremor

Soon after her diagnosis, Ruth encountered another challenge stemming from the lack of research and understanding of OT: there are no dependable treatments for the disorder. While there are several medications available to reduce tremors and pain, they do not work consistently for each individual, and most lose their effectiveness after a short time.

“Most of [the available medications] work for a short period of time until your body acclimates to them,” Ruth says. “And then your choice is: do you up the dosage, or do you try a different [medication]?” 

The first medication Ruth took after her diagnosis initially worked wonders, making her feel almost as good as before she developed symptoms. However, after a little over three years, the effects wore off and she had to try something different. Ongoing treatment is a constant process between Ruth and her doctor of trying to determine which medications are actually working. “A lot of it is experimentation,” she says.

Ruth stays up-to-date on the latest clinical trials and treatment options for OT and frequently communicates with researchers around the world. It’s difficult for doctors to pinpoint which treatments will help because the disorder affects people differently—methods that aid one individual may not benefit another. There has been some research into deep brain stimulation (DBS), which involves stimulating the brain through electrical pulses and has shown promise for treating other movement disorders like Parkinson’s disease. Ultimately, more research is needed to identify how OT forms and progresses to provide better targets for treatment.

The Physical and Emotional Toll of OT

As with other brain diseases and disorders, OT impacts not just physical health but mental health as well. Dealing with its effects has been challenging for Ruth. “It’s been extremely emotionally difficult because I was such an active participant in life,” she says. “I’m still the same me, but my body does not allow me to do the things that it once did.” 

Some days are better than others when it comes to accepting the new limitations and challenges of living with OT. “It creates a feeling of isolation, a feeling of powerlessness, a feeling that I have no control,” Ruth says. To combat those feelings, she meditates daily and is an active member of an international Facebook group for people with OT.

Ruth also feels extremely lucky to have the support of her family. Her husband has stepped into a caretaker role, assisting Ruth and taking on most of the household chores. He often helps her walk by holding hands—Ruth jokes that she leans on him physically and metaphorically. “He’s been amazing,” she says. 

Though Ruth says her husband puts on a brave face, he is also impacted by her disorder. “He tries not to let me see him be upset because of how I am suffering with this,” she says. She is thankful that she is functioning well enough for him to still enjoy his regular social activities like golf and poker. “I don’t want my condition to take away that,” she says.

Ruth has two adult children who have also been affected by her disorder. Her son and his family live out of state. Before she started experiencing symptoms, she could visit every few months, but now she sees them much less often. Ruth’s daughter and her family live nearby, but OT has taken an emotional toll on them as well. 

“It’s very hard for [my daughter] to see me because when I go to her house, I take my cane with me, and I kind of have to touch the wall to get around or touch a chair,” says Ruth. “I know it makes her very sad because she knew how active I was.”

Spreading Awareness and Inspiring Research

Ruth is passionate about spreading awareness of orthostatic tremor and hopes this will lead to more correct diagnoses and better treatments for people with the disorder. “One of the biggest problems is that [some] doctors [have] never heard of it,” Ruth says. “And how can you get a cure if they’ve never heard of it?” As a patient advocate, Ruth does everything she can—reaching out to health care organizations, writing statements, and contacting researchers—to put the spotlight on OT. 

Ruth is eager to participate in clinical trials to advance our understanding of OT, but there are currently few options. She hopes that educating the public and medical professionals about OT will lead organizations like the National Institutes of Health (NIH) and the National Institute of Neurological Disorders and Stroke (NINDS) to fund more clinical trials to help people living with the disorder.

Ruth believes that with more research, finding a way to slow the disorder’s progression may be achievable in the near future. Because brain diseases are interconnected, research into movement disorders like Parkinson’s, dystonia, and others will impact our understanding of conditions like OT and vice versa. 

That’s why investing in brain disease research is crucial—even studies about a rare condition like OT can potentially affect millions of people. While she advocates for life-changing research, Ruth practices acceptance and gratitude. “I am more than my body,” she likes to remind herself. “And I am grateful for the simple things in life.”

The American Brain Foundation is committed to finding cures for brain diseases. Donate today to make a difference. With your help, we can all experience life without brain disease.

Researchers have made incredible strides in Alzheimer’s disease diagnosis in recent years. Learn about some of the most exciting discoveries, and what to expect from the future of Alzheimer’s research.

More than 55 million people worldwide live with Alzheimer’s disease or another form of dementia. There is currently no cure for this devastating neurodegenerative disease, and finding earlier detection methods and effective treatments is crucial. The only way we will uncover better treatments and cures for brain diseases like Alzheimer’s is through research—and because all brain diseases are interconnected, discoveries in Alzheimer’s research will also lead to advancements for other diseases.

In recognition of Alzheimer’s and Brain Awareness Month, we’ve highlighted some of the most promising recent signs of advancements in Alzheimer’s disease.

Why Is it So Important to Fund Brain Disease Research?

We know that the different areas of the brain are all linked, so a disease that impacts one area often shares causes or symptoms with other similar diseases. For example, the neurodegenerative diseases Alzheimer’s, Parkinson’s, and Lewy body dementia (LBD) all share one key characteristic: misfolded protein buildups in the brain. Further research will enable early detection of these buildups and eventually unlock insights into how to treat and potentially reverse them. 

Even research that focuses on only one of these conditions has the potential to reveal shared mechanisms responsible for disease progression, significantly advancing diagnosis and treatment of the others. In this way, funding brain disease research has a ripple effect, with one discovery having the potential to impact hundreds of millions of lives.

Signs of Progress in Alzheimer’s Research

While there is still much more to learn, the last decade has seen significant advancements in Alzheimer’s disease research. “The ability to diagnose Alzheimer’s disease has advanced tremendously with the development of amyloid PET scans, tau PET scans, and now blood-based biomarkers. It’s revolutionized the field,” says Jasmeer Chhatwal, MD, PhD, MMSc, Associate Professor of Neurology at Harvard Medical School. 

Dr. Chhatwal received a Next Generation Research Grant from the American Brain Foundation in 2012 and now directs the Biomarkers of Neurodegeneration, Inflammation, and Cognitive Decline (BioNIC) laboratory at Massachusetts General Hospital. “Even within the last two years, we’ve seen two drugs that have shown signs that they can actually slow down cognitive decline,” he says. “I think that’s the first time in human history where we’ve actually had the possibility of disease-modifying therapies for a common [brain] disease like Alzheimer’s.”

Recent Breakthroughs in Alzheimer’s Research

Treatment

The FDA recently granted accelerated approval to lecanemab, a new Alzheimer’s drug that is offering hope to many who are living with this previously untreatable disease. Lecanemab targets the progression of Alzheimer’s disease rather than simply alleviating some of its symptoms. It appears to slow the advancement of cognitive decline and is currently used for people in the early stages of the disease. 

While we are still far from a cure, this is a promising first step toward being able to treat the most common form of dementia, which impacts over 6 million people in the U.S.

Early Intervention

Current Alzheimer’s research is significantly focused on slowing the progression of the disease. A recent study from Vanderbilt University and the University of Glasgow identified a way to reduce some of the underlying mechanisms responsible for the progression of Alzheimer’s. Researchers were able to activate a specific brain protein—called the M1 receptor—that plays a crucial role in learning and memory. This improved the brain’s ability to transfer information between neurons and reduced inflammation—both of which contribute to the spread of misfolded proteins and neurodegeneration.

Diagnosis and Detection

Because Alzheimer’s disease starts years before symptoms appear, early detection and slowing progression of the disease is critical. Many researchers are working on innovative ways to detect Alzheimer’s sooner than ever before. 

Researchers at the University of Cambridge analyzed health data and medical histories from half a million study participants and found they could accurately identify signs of dementia up to nine years before a diagnosis. Their goal is to create a more comprehensive screening method for neurodegenerative diseases so that doctors can detect early changes in brain function before symptoms appear.

Additionally, a research team in Bochum, Germany, discovered that using a particular sensor enabled them to detect Alzheimer’s disease in the blood up to 17 years before outward symptoms begin to show. Another study indicates it may soon be possible to diagnose Alzheimer’s using a single MRI scan and a specialized algorithm.

Current Research Funded by the American Brain Foundation

The American Brain Foundation is committed to funding research across the full spectrum of brain diseases and disorders through our Next Generation Research Grants program. Many of these innovative research projects will have implications for Alzheimer’s diagnosis and treatment. 

NGRG recipient Eva Klinman, MD, PhD, is working on understanding the underlying mechanisms that lead to age-related neurodegeneration. Her project aims to identify age-related changes inside cells that may increase the risk for aging brains to develop neurodegenerative diseases and determine if there are ways to repair these cells. Additionally, Jeffrey Motter, PhD – another NGRG recipient – is working to develop simple, inexpensive, non-invasive, and easily available diagnostic tests for early detection of neurodegenerative diseases. 

We are also partnering with the Alzheimer’s Association, The Michael J. Fox Foundation for Parkinson’s Research, and the American Academy of Neurology to fund research to find a blood-based biomarker (a biological indicator) to aid in the early diagnosis of Lewy Body Dementia (LBD). LBD is another common neurodegenerative form of dementia, meaning insights into diagnosis, progression, and treatment of one disease will impact the other.

At the American Brain Foundation, we know that curing one brain disease will lead to cures for many others. Brain disease impacts hundreds of millions of people around the globe—which is why funding research is so crucial. We hope you will join us during Alzheimer’s and Brain Awareness Month and beyond as we continue to invest in critical, life-changing brain disease research. With your help, one day we will all be able to enjoy life without brain disease.

The American Brain Foundation was founded to bring researchers and donors together in the fight against brain disease. Learn more about brain disease or make a gift to support groundbreaking brain disease research.

During this year’s Commitment to Cures, we raised funds for research, heard powerful stories from people impacted by brain disease, and celebrated the progress we’ve made in research and treatment.

The American Brain Foundation’s largest annual fundraiser, Commitment to Cures, is a time for our community to gather, share the latest advancements in brain disease research from leading experts, and hear inspiring stories from people living with brain disease. 

This year’s gala was emceed by Jim Cramer, host of CNBC’s Mad Money, and attended by over 500 people on April 26 in Boston. We were joined by a number of incredible researchers, scientists, and advocates—alongside a few celebrities—who are collectively leading the charge in the fight against brain disease.

Each year at Commitment to Cures, we honor leading researchers and advocates who have advanced our understanding of brain disease and brought awareness to the importance of funding research. At this year’s gala, we recognized several award recipients:

• Josep Dalmau, MD, PhD, FAAN, and Vanda Lennon, MD, PhD were honored with the Scientific Breakthrough Award for deepening our understanding of autoimmune neurologic diseases like encephalitis, stiff person syndrome, and others. 
• HuffPost founder Arianna Huffington received the Public Leadership in Neurology Award for her work raising public awareness of the importance of sleep and brain health through her book, Sleep Revolution: Transforming Your Life One Night at a Time. 
• Celebrated singer and guitarist Peter Frampton received the Ambassador Award for elevating public awareness of inclusion-body myositis, an inflammatory autoimmune disease he was diagnosed with in 2015. 

We also recognized many others for their outstanding achievements in brain disease research and treatment.

We were honored to have two special guests with us, Frani Broussard and Tom Seaman, who shared their powerful stories of life with brain disease—and how funding research is the key to ending it. Frani’s son was diagnosed with adrenoleukodystrophy (ALD) at a young age, setting the family on a lifelong journey to find answers and treatment. Tom’s dystonia diagnosis upended his life in 2001, but in the years since, he has funneled his experience into a career in advocacy and works to empower people who are living with movement disorders around the world. Both represent a bright future for advocacy, education, and awareness, giving a voice to thousands of people living with brain diseases and disorders like ALD and dystonia.

With the help of our donors, we raised $565,000 for brain disease research. We also received support from a record number of sponsors who made this year’s Commitment to Cures gala such a success. All proceeds from this event go toward promoting and funding critical research that will uncover treatments and cures for many brain diseases and disorders. If you contributed this year, we thank you from the bottom of our hearts.

Without research, there will be no cures for the brain diseases and disorders that impact millions of people worldwide. This year’s Commitment to Cures raised critical funding that researchers need to make strides toward treatments and cures for all brain diseases. We are incredibly grateful for the overwhelming support we received from our sponsors, donors, researchers and advocates this year.

If you were not able to join us this year, you can still get involved with the American Brain Foundation by attending one of our many free webinars, keeping up with the latest news and research, or signing up for our newsletter.

The American Brain Foundation was founded to bring researchers and donors together in the fight against brain disease. Learn more about brain disease or make a gift to support groundbreaking brain disease research.

Some brain diseases are more likely to be overlooked and go undiagnosed because of signs and symptoms that overlap with mental health conditions. 

People living with mental illness often face stigma and additional struggles getting a diagnosis for certain brain diseases. May is Mental Health Awareness Month, and in an effort to bring awareness to this topic, we are taking a closer look at how stigma around mental illness contributes to health disparities in neurology and brain health.

What Are Health Disparities in Brain Health?

Health disparities refer to differences or gaps in health care for certain groups of people. Research has shown that brain disease has a higher impact on people in lower socioeconomic groups and underserved geographic and global populations, as well as many marginalized populations in the U.S., including Black, Latino, Asian, Native American, and LGBTQ+ individuals. (Read about one of our funded researchers’ projects investigating racial disparities in end-of-life care for Parkinson’s disease.)

People who are dealing with mental health issues also face a unique set of challenges that contribute to disparities in diagnosis and care. For example, they may have trouble describing the subtle differences between certain mental health symptoms and symptoms of brain disease. In some cases, healthcare providers may miss some symptoms of brain disease because they overlap with symptoms of a mental health condition (or may wrongly credit new symptoms to an existing mental health diagnosis).

In a given year, approximately 20 percent of Americans over the age of 18 meet the criteria for a diagnosable mental disorder. This includes a range of different diseases, including depression, schizophrenia, attention deficit hyperactivity disorder (ADHD), and obsessive-compulsive disorder (OCD). 

Bias Around Mental Illness Can Make Brain Disease Harder to Diagnose

People with mental illness tend to die earlier and have higher rates of comorbidities than the general population. This is in part due to the fact that for people with a history of mental health issues, some less common physical symptoms of brain disease and other disorders can be mistaken for mental illness. 

Many in the medical community acknowledge that this common bias negatively impacts people with mental health issues and leads to what is called “diagnostic overshadowing.” Diagnostic overshadowing can cause doctors to mistakenly overlook serious medical conditions. For example, they may assume chest pain is due to anxiety and panic attacks or mistakenly view nausea and abdominal pain as the result of mental or emotional disturbances. 

In one unfortunate example of diagnostic overshadowing, doctors in the U.K. told one woman with a mental illness listed as a pre-existing condition that her symptoms—loss of movement on her left side and garbled speech—were not the result of a stroke but instead had psychological causes. While she was later diagnosed with Moyamoya disease, a rare brain disease that causes debilitating “mini-strokes,” she had already experienced lasting damage to her mobility and vision. She believes that her 15-year history with mental illness influenced how her doctors initially viewed her symptoms and came to a diagnosis.

Doctors take great care to arrive at accurate diagnoses, but mental illness often complicates this process because some symptoms of mental health disorders and neurologic diseases overlap. In some cases, a person may have trouble describing their symptoms and communicating the differences between mental health symptoms and physical ones. Mental illness can affect the way a person thinks, feels, and behaves, and symptoms can range from mild to severe—just like many other brain disorders. Additionally, some neurologic conditions, such as Huntington’s disease and dementia, are associated with personality changes like apathy and aggressive behavior or mood disorders like depression and anxiety. 

The lines between brain disease and mental health have become even more blurred in recent years, as researchers continue to uncover biological causes for certain mental illnesses as well as how mental illness may impact the structure and function of a person’s brain.

Stigma in Mental Health Care

Social stigma refers to generalized negative beliefs about a person or group of people because of a specific distinguishing characteristic. The stigma surrounding mental illness can make it more difficult for people with brain disease to get an accurate diagnosis and effective treatment.

Because of the stigma surrounding mental illness, people may feel self-doubt and shame about seeking care for their mental health symptoms as well as other medical issues. They may face a lack of understanding from their own family and friends, and therefore worry they won’t be taken seriously by medical professionals.

Studies show that people who have a mental illness receive poorer quality care for their physical health problems. This may be due to a range of factors, from reluctance to seek care or report certain symptoms to broader prejudices and stereotypes influencing diagnosis and clinical treatment.

How Research Can Reduce Disparities in Neurologic Care

At the American Brain Foundation, we are committed to funding research into health disparities in neurologic care as well as spreading awareness and education about brain disease. Education can reduce the stigma around mental health and encourage people to self-advocate and seek care for their symptoms.

We know that research will lead to better diagnosis and treatments for all brain diseases, including a deeper understanding of the relationship between brain disease and mental illness. Learning more about the connections and overlapping symptoms between brain diseases and mental illness will help fight bias and enable doctors to make more accurate diagnoses. With your support, we can reduce the health disparities in neurology due to mental illness.The American Brain Foundation is committed to finding cures for brain diseases. Donate today to make a difference. With your help, we can all experience life without brain disease.

Learn how recent advancements in wearable technology are helping manage brain diseases and conditions like epilepsy and tinnitus.

For years, wearable technology has been used to improve people’s general health—users can track their daily steps, see how well they’re sleeping, monitor their heart rate during exercise, and more. However, the latest advancements are pushing wearable tech even further to help people manage a range of brain diseases and disorders. 

We hosted a webinar discussion about wearable technology with David Eagleman, PhD, adjunct professor at Stanford University, and Gregory Krauss, MD, professor of neurology at Johns Hopkins University. They spoke about the current impact of wearable tech on brain disease treatment and offered insights on possible future applications and who may benefit from using this technology.

What Is Wearable Technology?

Wearable technology is a general term for electronic devices designed to be worn throughout the day. Also called wearables, these devices can take the form of watches, jewelry, sensors, or even patches that go on the skin. 

Wearable devices may gather health data to help individuals and doctors monitor a health condition or alert caregivers in an emergency. Other types of wearables help people track symptoms or regulate medication use. Much of the current generation of this technology uses the internet to connect to other devices like computers and smartphones so users can monitor their health data via an app.

Current wearable technology differs from many of the existing neuromodulation devices on the market—like those used in deep brain stimulation—in that they are less invasive and do not directly affect or alter a person’s brain or body functions. However, as wearables become more compact and programming capabilities become more complex, they are increasingly being used for non-invasive neuromodulation for a range of diseases and disorders. 

What Are the Medical Applications of Wearable Technology?

The medical community has largely embraced wearable technology for its ability to continuously monitor vital signs and offer innovative new treatment options for conditions that are difficult to manage. Individuals like wearable tech because it provides easy access to their health data and can keep them more informed and empowered in their own treatment. These devices have several major benefits: they are non-invasive, user-friendly, cost-effective, and offer a more tailored approach to managing health conditions.

Wearables can also aid in diagnosis because they give doctors access to more accurate, comprehensive data about a person’s symptoms. Additionally, they can record events the wearer may not be aware of, such as heartbeat irregularities or sleep problems.

This ability to continuously monitor a wide range of symptoms and other health data also impacts treatment. Data can be used to note disruptions to healthy functioning, recognize biological or behavioral patterns, and create predictions about health outcomes for each individual. Wearable technology can also function as treatment equipment to alleviate symptoms and improve quality of life.

How Does Wearable Technology Help Treat Brain Disease?

The advancement of wearable technology is especially exciting when it comes to brain health. Often small, lightweight, and easy to use, these devices can reliably reveal a more comprehensive picture of an individual’s overall brain health.

Brain diseases and disorders are complex, and because each person’s brain is different, the causes, symptoms, and outlook for a given disease will vary from person to person. Wearable devices provide accurate and objective data for each individual—allowing for treatment planning that is much more personalized and effective than relying on generalized information or self-reported data (which can be biased and inaccurate). Wearable technology also allows individuals and their doctors to more frequently reassess their current course of treatment.

Wearable Technology for Epilepsy

Recent developments in wearable technology have had a significant impact on epilepsy treatment. Dr. Krauss notes how helpful wearables can be for seizure detection, increasing safety and independence for people with epilepsy. There are several of these types of devices on the market, most of which are a wristband or smartwatch.These devices can reduce potential injuries by detecting a seizure in advance and transmitting a warning to the individual and caregivers.

Some devices also prompt individuals to respond to surveys immediately following a seizure, which can help identify potentially avoidable seizure triggers in the future. “There’s a variety of things that can increase risk for seizures, [including] stress, exhaustion, and menstrual periods with hormonal changes,” says Dr. Krauss. “This helps patients identify these things.”

Wearable technology can also identify someone’s risk for sudden unexpected death in epilepsy (SUDEP) and aid in prevention. SUDEP refers to death in people with epilepsy during or right after a seizure. It is thought to be caused by breathing problems, heart rhythm changes, or a combination of both. Having a certain type of seizure, called a tonic-clonic seizure, increases the risk of SUDEP.

“We have [wearables] that can specifically detect tonic-clonic seizures, log them, and warn patients and caregivers about their occurrence,” says Dr. Krauss. This is a potentially major application of this technology, as it can help doctors and caregivers monitor an individual for this elevated risk of SUDEP and take precautions.

Wearables for Hearing Loss and Tinnitus

Dr. Eagleman’s fascination with how the brain receives and processes sensory information led him to develop a wristband that enables people who are deaf to experience sounds. The wristband captures sound through a microphone and then translates it into specific vibrations. Over time, the person’s brain learns how to match certain sounds to different vibration patterns.

The success of this wristband led Dr. Eagleman to develop other versions of similar wearable technology: one for hearing loss associated with aging and another for tinnitus (a ringing or buzzing noise in the inner ear). The tinnitus wristband pairs with a phone app to enable bimodal stimulation, which means using two different types of sensory stimulation at the same time. In this case, the combination of sound and touch retrains the brain’s neural networks, and the brain learns to distinguish external sounds from internal sounds, which reduces tinnitus over time.

Future Applications for Wearable Technology

Problems with balance can naturally arise as people get older, but they can also stem from traumatic brain injury (TBI) and movement disorders such as Parkinson’s disease. Dr. Eagleman is working on a project to address these balance problems through wearable tech. “We built a collar clip with a nine-axis motion detector in it,” he explains. “That talks to a wristband via Bluetooth—so if you tilt, the collar clip tells the wristband how much and in which direction you’re tilting.” For people whose ability to detect balance has been impaired, this information enables someone to correct their balance and avoid possible injury.

Researchers are currently exploring whether wearable tech can alleviate tremor, a disorder that causes shaking or unsteady movements. Tremor can develop independently or as the result of another condition, such as multiple sclerosis, stroke, TBI, or Parkinson’s disease. Dr. Eagleman explains that tremor is due to the mistiming of movement signals coming from and returning to the brain. Researchers are testing whether wearable technology providing stimulation at the right moment can override these mistimed signals and reduce tremor.

Dr. Eagleman believes that soon wristbands will also be able to address another symptom of Parkinson’s disease called freezing of gait (FoG), in which a person is suddenly unable to walk. Dr. Eagleman published data showing that auditory rhythms can alleviate FoG. Though more research is needed, he suspects that signals from a wristband will be able to yield the same results.

Wearable technology has made considerable advancements in the last decade—and there is so much more potential on the horizon. With more research, wearable tech can offer better treatment options and significantly improve the quality of life for people with brain diseases and disorders.

Stay updated on the latest news from the American Brain Foundation by following us on Twitter and Facebook. Only through research will we find cures for all brain diseases and disorders. Donate today to make a difference.

The impact of brain disease goes far beyond its immediate symptoms. Brain disease often takes a social, emotional, and financial toll on the individual and their loved ones.

Brain disease can involve financial strain, negatively impact a person’s mental and emotional health, and put stress on personal and family relationships. The challenges of brain disease require a strong network of family and friends who are willing to go the extra mile to act as caregivers and provide a support system. All of these aspects contribute to the overall burden of brain disease.

What Is Disease Burden?

In the case of brain disease, burden refers to the larger impact of a disease on a person and their community. Brain disease often prompts changes to people’s social lives, not just for the person who is diagnosed, but for their family and friends as well. Many times, other people may have to act as caregivers, help manage the household, provide financial support, or simply deal with the change in their relationship with their loved one. People living with brain disease also experience a financial impact, from paying for medical care and medications to adjusting their home environment and lifestyle to accommodate their needs.

Health organizations like the CDC often consider the “burden of disease” on a broader scale. They account for a range of health, social, political, environmental, and economic factors when calculating the full “cost” of disease on an individual and society. This goes beyond the direct health care expenses and includes the social and economic losses caused by disease and disability, the availability of medical care, and other public health problems.

The Challenges of Disability

Many brain diseases contribute to the degree of disability that impacts a person’s ability to work and participate in social activities, in turn affecting their financial and emotional well-being. According to the World Health Organization, neurologic conditions are the leading cause of disability adjusted life years (DALYs). Some of the top conditions that contribute to neurological DALYs include stroke, migraine, dementia, meningitis, and epilepsy.

For people like Julie Turner, one of the most challenging consequences of brain disease was no longer being able to work. Her career as a nurse brought her joy for decades, but the impact of cerebral small vessel disease (CSVD) on her memory and thinking skills eventually meant she couldn’t safely do her job. “I loved my job for 40 years and was forced to quit,” she says. “That was hard for me, to lose my whole career.”

Disability can also require additional care and support in the form of hired or family caregivers, transportation, adaptive equipment, and more. With neurodegenerative diseases, the degree of disability—and the level of care required—often increases over time. Globally, the number of people who are 60+ years old is expected to rise from 1 billion in 2019 to 2.1 billion by 2050. Many brain diseases first start showing symptoms in later years or progress more rapidly due to the aging process, and with this growing population, we can expect a larger social burden from age-related diseases.

The Financial Costs and Economic Burden of Brain Disease

The direct and indirect costs of brain disease are significant. One study estimated the economic burden of major neurologic diseases to be approximately $800 billion annually in the United States. Alzheimer’s disease and other dementias are the largest contributors to this figure. 

The economic costs of brain disease not only include the burden of care but also factors like lost wages—both for an individual who is unable to work and for loved ones who need to become caregivers. According to a recent AARP study, 8 out of 10 people surveyed said they regularly have to pay for daily caregiving costs that aren’t covered by insurance. The survey found that the typical annual total for out-of-pocket caregiving costs is $7,242. Many caregivers also have to take time away from work or shift to part-time schedules, dip into savings, or cut back on retirement contributions.

“I wish people knew that it doesn’t just affect the person, it affects the whole family,” says Courtney Fraser, who lives with a traumatic brain injury and epilepsy. “It costs money for medications, it costs money for doctor appointments, it costs taxpayers a lot to help people who are on Medicaid—and a lot of people with epilepsy and other brain diseases have to be on Medicaid because they don’t have income.”

Many families also have additional expenses in the form of professional caretaking services, adaptive equipment, and home modifications. For example, caring for someone with spinal muscular atrophy (SMA) may require a manual or power wheelchair, adaptive stroller, car bed (to allow them to lie down while traveling), and medical equipment like feeding tubes and machines to keep their airway clear. Families may also need to modify their home environment with ramps, widened spaces, adaptive seating, and other items that make daily activities safe and comfortable.

The Emotional Toll on Loved Ones

Brain disease can have a major impact on a person’s relationships with their family and friends.  Managing brain disease often puts strain on the entire family and support network, especially as they face changing relationship dynamics and expectations of what the future will look like.

A family member may have to transition to a caregiving role, which can feel overwhelming and demanding. “Caregiving is one of the most mind-bending, surreal, frustrating, exhilarating, and lonely experiences that one person can go through,” says Dan Gasby, author and caregiver advocate. The heavy emotional burden of caregiving can lead to mental health issues for the caregiver, such as anxiety and depression.

There are currently about 48 million individuals caring for an adult family member or friend. Caregiving requires balancing many demands, including coordinating responsibilities, navigating the healthcare system, and providing physical care. It’s important for caregivers to get respite and support so they can alleviate stress and reduce feelings of isolation.

The Social Inequities of Brain Disease

The burden of brain disease also extends to socioeconomic and racial disparities—notably the tremendous racial disparities that exist for Black populations in the U.S. 

“Brain health is the greatest 21st century civil rights issue,” says Gasby. “When you lose your cognitive ability, your rights as a human being are greatly diminished.” He notes that this is particularly devastating for Black people in the U.S., who are twice as likely as non-Hispanic white populations to develop late-onset Alzheimer’s and less likely to have a diagnosis of their condition, which often results in significantly less time for treatment.

While the burden of brain disease is significant, there is an opportunity for change. Creating awareness is only the first step. Along with our partners, donors, and supporters, the American Brain Foundation works to address these issues by supporting brain disease research, providing educational resources, and promoting advocacy efforts. Together, we can take steps to reduce the burden of brain disease for all of us.

The American Brain Foundation is committed to finding cures for brain diseases. Donate today to make a difference. With your help, we can all experience life without brain disease.

Learn how dementia and other brain diseases impact disadvantaged populations worldwide, and how research is helping address disparities in brain health.

 

Of the 50 million people impacted by dementia worldwide, the highest toll is experienced by at-risk and disadvantaged populations—and the number of people affected is increasing rapidly. The World Health Organization estimates that there will be 152 million people living with dementia by the year 2050. Without intervention, a disproportionate number of these individuals will be from underprivileged communities, with an increasingly high number of these cases being preventable.

We explored this issue in a recent webinar with Bruce Miller, MD, FAAN, director of the UCSF Memory and Aging Center and director of the Global Brain Health Institute. Dr. Miller shared his insights about how at-risk and disadvantaged populations around the world are affected by dementia and what the scientific community is doing to address it. Learn what Dr. Miller had to say as well as how you can support critical brain disease research below.

What does equity have to do with global brain health?

Equity refers to justice and fairness for all people. It means acknowledging that we don’t all start with the same opportunities and access to resources, and making adjustments to address imbalances. Health equity ensures that everyone has a fair opportunity to live a healthy life, regardless of their social and economic status. Achieving health equity requires ongoing efforts to address injustices that impact communities’ current and future health and eliminate preventable health disparities.

So why are we talking about equity when we discuss global brain health? Economically disadvantaged populations are often at higher risk of developing health issues and frequently experience the highest impact of major brain diseases. Part of the reason for this is that underserved communities have less access to health and medical resources. However, on a larger scale, low- and middle-income countries often lack the training and infrastructure to support optimal brain health among their more at-risk populations.

Researchers are finding that even factors like access to education—which may not seem to be immediately tied to health outcomes—can impact brain health in disadvantaged global populations. Dr. Miller points to a study in Brazil that found that people over the age of 60 who were illiterate or had less than four years of education had a smaller hippocampus than people the same age who had learned to read. The hippocampus is the region of the brain involved in learning and memory.

“Just the simple measure of how big is your hippocampus—how big is this tiny little region in the brain where Alzheimer’s disease starts, and which helps us to remember from moment to moment? Think of the inequity of this,” says Dr Miller. “You come from a poor family, you don’t learn how to read, you don’t develop the connections in your memory system that might help you navigate life. Then on top of it, this increases the likelihood that you develop cognitive impairment later in life.”

How do modifiable risk factors affect dementia?

Modifiable risk factors are changeable conditions that can increase or decrease your chance of developing a disease. According to studies, modifiable risk factors are responsible for up to 40% of worldwide dementia cases.

While genetics certainly play a role in developing dementia, numerous modifiable risk factors are also involved—many of them impacting people even in early childhood. Factors like access to education, clean air and a safe living environment, and familial health factors can all impact brain health.

“We believe that social determinants of health are ultimately the determinants of how well our brain ages. For example, if you could intervene around education early in life, it would have a positive outcome across the lifetime of that person,” Dr. Miller explains. “So it’s really an equity issue. If you’re not given the chance to develop your brain…you are going to suffer consequences across your lifespan.”

What is being done to address equity in global brain health?

The Global Brain Health Institute (GBHI) was formed in 2016 with a mission to protect the brain health of the world’s aging populations. Created with the help of Irish-American philanthropist Chuck Feeney, GBHI is a partnership between the University of Southern California, San Francisco (UCSF), and Trinity College Dublin (Trinity). 

The institute supports equity in global brain health in several ways. When it was initially founded, Mr. Feeney donated seven billion dollars to invest in health infrastructure for low- and middle-income countries. These funds went toward creating hospitals and providing vital equipment like MRI machines in underserved areas. Another billion dollars went toward creating GBHI’s Atlantic Fellows program, which provides comprehensive training and support for emerging leaders to improve global brain health and reduce the impact of dementia on at-risk populations. 

“The idea is we will train fellows. They will mostly come from low- and middle-income countries or communities in the United States and Ireland. They will try to reduce the scale and impact of dementia worldwide,” Dr. Miller explains. “Changes in lifestyle will be important, and many of the fellows are thinking about changing lifestyles in their own countries…We think that a broad education for these fellows is really going to be important, because they’re going to have to talk to their health ministers in their countries and convince them that brain health is important, [and that] it may even be cost effective.”

GBHI also works with the Alzheimer’s Association and the Alzheimer’s Society UK to offer a pilot project program. Each GBHI fellow is eligible to participate and create a pilot project they can bring back to their country of origin. Many smaller-scale projects lead to larger projects with a significant impact. Past projects have included a widely-used kid-friendly video teaching children about the importance of brain health and an initiative to improve the brain health of illiterate people over 60 by teaching them how to read.

Why Funding Research Is So Important to Global Brain Health

We all deserve to enjoy life without brain disease, but there is a great deal of work and research that must be done for that to be possible. Across the world, we need ongoing research efforts as well as outreach and education programs in underserved communities. At the American Brain Foundation we work to connect donors and researchers in the fight against brain disease, because we know that without research, there will be no cures. 

Interested in learning how you can help us address inequities in global brain health? There are many ways to support our mission. Your donation enables countless critical research programs to make important discoveries that will lead to treatments and, one day, cures for all brain diseases and disorders.

The American Brain Foundation was founded to bring researchers and donors together in the fight against brain disease. Learn more about brain disease or make a gift to support groundbreaking brain disease research.

Learn about the amazing advocates and researchers who are helping us raise support for brain disease research as we pursue the treatments and cures of tomorrow. 

 

At the American Brain Foundation, we are proud to fund research across the full range of brain diseases and disorders. We know that advancements in one research area will lead to additional treatments and cures in many others, and that only through research will we achieve our vision of life without brain disease.

We are thrilled to announce our 2023 Commitment to Cures awardees, who have helped us advance our mission through critical contributions to research and tireless efforts to raise awareness about brain disease.

“Each of this year’s award recipients has made incredible strides in the areas of brain disease research and public awareness and education. Their work today is creating the foundation for the treatments and cures of tomorrow,” says American Brain Foundation Chair David Dodick, MD, FAAN. “As we look toward the future, we are reminded that without the support of incredible advocates and researchers—and all of our sponsors and supporters—there can be no cures.”

We will be recognizing our 2023 awardees at our annual Commitment to Cures Gala in Boston later this month. Please join us in celebrating their important work and achievements below!

Arianna Huffington: Public Leadership in Neurology Award

We are honoring HuffPost founder Arianna Huffington for her work raising public awareness of the importance of sleep and brain health through her book Sleep Revolution: Transforming Your Life One Night at a Time. In her book, Huffington explores recent research on how sleep impacts brain function and offers insights on the vital role sleep plays in our physical and mental well being.

Researchers are increasingly realizing that there are significant links between sleep and neurodegenerative diseases like Alzheimer’s, Parkinson’s, and Lewy body dementia—but these links are not yet fully understood. By bringing attention to the often overlooked issue of healthy sleep habits, Huffington gives us hope of better understanding these links and provides tools for millions of people to better look after their own brain health.

“I’m truly honored to receive the Public Leadership in Neurology Award from the American Brain Foundation,” says Huffington. “I’m thrilled to be working in parallel with the neurology community to raise public awareness of how critical prioritizing our well-being is for brain health.”

Peter Frampton: Ambassador Award

Celebrated singer and guitarist Peter Frampton is being recognized for elevating public awareness of inclusion-body myositis (IBM), an inflammatory autoimmune disease he was diagnosed with in 2015 and that causes progressive muscle weakness. In 2019, Frampton established the Peter Frampton Myositis Research Fund at Johns Hopkins University to improve the lives of people living with myositis and, ultimately, find a cure.

Because IBM progresses slowly and shares early symptoms with diseases like amyotrophic lateral sclerosis (ALS), it is difficult to diagnose. Research that helps us better understand and diagnose this rare condition will lead to insights and treatments for a range of other progressive neuromuscular diseases.

“When I was first diagnosed with inclusion-body myositis I knew my life would be forever changed,” says Frampton. “What I didn’t initially realize was how my platform could help to raise awareness of this condition and change the lives of others for the better. I hope we can aid the American Brain Foundation’s research efforts to find a cure.”

Josep Dalmau, MD, PhD, FAAN, and Vanda Lennon, MD, PhD: Scientific Breakthrough Award

The American Brain Foundation is recognizing Dr. Josep Dalmau and Dr. Vanda Lennon with our Scientific Breakthrough Award for their career-long commitment to deepening our understanding of autoimmune neurological diseases like encephalitis, stiff person syndrome, and others. Their collective body of work has defined and transformed the field of autoimmune neurology and has had a major impact on the diagnosis and care of patients with autoimmune neurologic diseases around the world.

Dr. Dalmau put autoimmune encephalitis on the map by discovering 10 autoimmune encephalopathies that were previously not able to be diagnosed or treated. Dr. Lennon’s autoantibody research has resulted in leaps forward in the diagnosis and treatment of countless autoimmune diseases. Her name has become synonymous with autoimmune neurology. Thanks to the work of Dr. Dalmau and Dr. Lennon, many autoimmune neurologic diseases can now be cured.

Deanna Saylor, MD, MHS: Ted M. Burns Humanism in Neurology Award

Dr. Saylor is being recognized for her work establishing the first neurology residency program and first neurology inpatient service in Zambia at the University Teaching Hospital in Lusaka. Her dedication to improving the availability and quality of neurologic care by training future leaders in neurology in sub-Saharan Africa exemplifies a compassionate, patient-centered approach. 

“Being selected [for this year’s award] is important because it recognizes the importance of high-quality, compassionate neurology education in all parts of the world so that people everywhere can continue to access skilled, patient-centered neurologists who can walk with them on their journey with neurological disorders,” says Dr. Saylor.

Maria Luisa Gorno-Tempini, MD, PhD: Potamkin Prize for Research in Pick’s, Alzheimer’s, and Related Diseases

The Potamkin Prize is the highest honor in Alzheimer’s research, and is given to recognize foundational contributions to research in Alzheimer’s disease and related dementias. Dr. Gorno-Tempini’s research has deepened our understanding of the brain functions responsible for language. Her work has resulted in new guidelines for diagnosing primary progressive aphasia, enabling earlier and more effective treatment for people with the disease. Additionally, her research has profound implications for our understanding of dyslexia and how early brain development may contribute to neurodegeneration later in life.

Virginia Lee, PhD: Sheila Essey Award for ALS Research

Dr. Lee’s work has been critical in establishing how misfolded protein buildups in the brain contribute to neurodegenerative diseases like Alzheimer’s, amyotrophic lateral sclerosis (ALS), Parkinson’s, and others. Specifically, Dr. Lee’s research discovered a link between the TDP-43 protein and the development of frontotemporal dementia (FTD) and ALS. These discoveries have been foundational in advancing our understanding of these diseases and have given researchers new targets for investigating better treatments and developing new testing methods. Additionally, her career-long dedication to mentoring younger colleagues will continue to impact the field for generations to come.

Sanjay Singh, MD, FAAN: Association of Indian Neurologists in America Lifetime Achievement Award

Dr. Singh is being honored for his career-long dedication to mentoring neurologists in India and the U.S. Dr. Singh was only the second neurologist of Indian origin to be promoted to chairman at a major university, and over the last 11 years he has mentored countless other neurologists, many of whom have risen to similar levels at various institutions.

Since 2010, Dr. Singh has led development of the Neuroscience Institute and Neurology Service Line at Creighton University, which now provides the region’s most advanced neuroscience care. Dr. Singh was also president of the AINA during the COVID-19 pandemic, during which he not only helped the organization survive but also established scholarship funds to help train neurologists from India.

Gretchen Birbeck, MD, MPH, DTMH, FAAN; Bhim Sen Singhal, MD, FAAN; and Olha Tychkivska, MD: Mridha Spirit of Neurology Humanitarian Award

The Mridha Spirit of Neurology Humanitarian Award recognizes neurologists and neuroscientists who have made great strides in bringing neurological care and resources to impoverished communities of the world. 

For nearly 30 years, Dr. Gretchen Birbeck has been a leader in advancing the care of patients with neurologic disorders in Zambia and Malawi. Her clinical care, research, and capacity-building efforts have had a ripple effect in the region, revolutionizing care for patients in sub-Saharan Africa while also legitimizing global health as a specialty focus within the neurology field.

For over six decades, Dr. Bhim Sen Singhal has worked tirelessly to help patients with debilitating neurological diseases and has devoted himself to developing the field of neurology across India. Recognizing the need to promote patient care and neurological education in India, he established Neurology Foundation India and the Parkinson’s Disease and Movement Disorder Society of India. 

Dr. Olha Tychkivska is being recognized for her heroic efforts to secure epilepsy medications and other high-priority drugs for people in Ukraine. In addition to remaining a full-time physician caring for her own patients, she works with colleagues at the Ukraine Neurology Initiative to distribute medication to children in need throughout the country.

Our annual Commitment to Cures Gala will be held in Boston on April 26. If you would like to attend the event in person, you can get your tickets or make a donation here. Looking for more ways to support the critically important work of researchers like our award recipients above? You can also start your own fundraiser to spread awareness and ask your friends, family, and extended network to join you in the fight against brain disease. 

The American Brain Foundation was founded to bring researchers and donors together in the fight against brain disease. Learn more about brain disease or make a gift to support groundbreaking brain disease research.

Dr. Miocinovic discusses how device-based therapies like deep brain stimulation are leading to more effective, personalized care for people with movement disorders like Parkinson’s, tremor, and dystonia.

 

At the American Brain Foundation, our commitment to the philosophy of Cure One, Cure Many drives our efforts to support researchers working in many different research areas. Research is the only way we will find better treatments, diagnosis methods, and cures for the brain diseases and disorders impacting millions of people worldwide. Our Next Generation Research Grants are offered in partnership with the American Academy of Neurology in order to fund early-career researchers pursuing innovative research projects across the whole spectrum of brain diseases and disorders. 

Svjetlana Miocinovic, MD, PhD, was awarded a research grant funded by the American Brain Foundation in 2014 and has gone on to receive grants from the Dystonia Medical Research Foundation and the National Institutes of Health. Dr. Miocinovic is currently an Associate Professor in the Department of Neurology at Emory University School of Medicine. She is the principal Investigator at the Miocinovic Lab and specializes in Parkinson’s disease, dystonia, tremor and other movement disorders at Emory Healthcare. 

Her research focuses on how electrical signals in the brain affect motor function in people with movement disorders like Parkinson’s disease and dystonia. We spoke with Dr. Miocinovic about how her American Brain Foundation-funded research established a foundation for her current work with the Miocinovic Lab and the role of computers and artificial intelligence in recent advancements in device-based therapies like deep brain stimulation.

The following interview has been condensed and edited for clarity.

Why were you inspired to study the brain?

I became interested in neuroscience in college. The brain is the most fascinating and complicated organ in our body. It is the final frontier when it comes to understanding our bodies and ourselves as humans. So that eventually got me interested in pursuing neurology.  

What specific issue is your research trying to address?

I study movement disorders such as Parkinson’s disease and dystonia. These disorders arise from miscommunication between brain areas responsible for motor function. Deep brain stimulation (DBS) is a surgical treatment that we use to treat movement disorders when medications are not effective. DBS is a brain pacemaker. It injects small amounts of electrical current into the brain to correct miscommunication between the brain cells, which also communicate with each other by sending tiny electrical signals back and forth, similar to a telephone cable.

My research is focused on understanding how DBS works and how to make it better. Right now, after DBS surgery, patients have to spend many months getting the stimulator adjusted using a trial and error approach. Our goal is to make smart stimulators that can self-adjust using patients’ own brain waves. That way a person can get more stimulation when they need it, and less when they don’t (for example, when sleeping or not moving). This should also reduce unwanted side effects that can be caused by stimulation. 

We are also working on developing computer-assisted DBS programming. There are many possible stimulation settings, and artificial intelligence can help improve this selection process. Finally, we are undertaking in-depth studies to learn which specific brain areas need more attention when it comes to treating movement disorders. We use high-resolution recording electrodes during DBS surgery to listen to how brain cells communicate with each other in people with Parkinson’s disease and other conditions.

What did your American Brain Foundation-funded Next Generation Research Grant enable you to work on?

I was awarded a research grant in 2014 just as I was finishing my clinical training to become a movement disorders neurologist. Prior to that I completed graduate school where my research focused on computer models and animal studies. The fellowship funding allowed me to spend two years in a clinical lab learning how to study these disorders in humans and use methods that would be directly applicable to my patients. Specifically, I recorded brain wave activity from people with Parkinson’s disease and dystonia to discover how DBS can correct underlying abnormalities.

What kinds of insights or discoveries did this research lead to? What additional or current research did it enable?

The research I did during my American Brain Foundation fellowship made me realize how we can use brain recordings to figure out which specific brain pathways are being activated by DBS. Up until then, these types of in-depth studies were mainly done in animals, but now we have a way to address these questions directly in patients. This led to my current research projects to improve DBS.

How did this early American Brain Foundation-supported research open doors for additional research funding or future research projects?

The fellowship made it possible to receive a coveted NIH career-development grant. This allowed me to start my own lab and pursue ideas I developed during the fellowship. After that I received a couple of other big NIH grants. This expanded the scope of the projects I could undertake. I was able to hire several researchers to work full time on my projects and answer these important questions. 

How would discovering treatments or a cure for one brain disease impact other diseases?

Most of what we learn about DBS for movement disorders will be applicable to many other neurologic and psychiatric disorders where brain circuits miscommunicate. DBS has been studied as a treatment for depression, OCD, Alzheimer’s, and many other conditions. In all these conditions, we also need to better understand how the effects of stimulation spread through the brain and how to select the best stimulation settings for individual patients.   

What do you hope your research will do to help patients and their families?

I hope that my research will make DBS accessible to a larger number of patients who could benefit from this therapy. Many people live far away from specialized DBS centers and are unable to come to frequent clinic appointments to adjust the stimulator. We also do not have enough neurologists who can perform this type of work because of its complexity. I hope that one day brain pacemakers will be as common and as simple to use as cardiac pacemakers.

How far has research come since you began your career, and what are the most exciting discoveries and developments you’ve seen since you entered the field?

When I started medical school, DBS was still considered an experimental treatment for Parkinson’s disease. Now it is a standard-of-care therapy for Parkinson’s, tremor, and dystonia, and it has been tried in dozens of other neuropsychiatric conditions. 

Computers have also become more powerful and “intelligent,” and we can use them to answer many questions in neuroscience. We have much better ways of estimating the spread of stimulation effects in the brain using very sophisticated computer calculations. We have learned a lot about how neurons communicate with each other and how this goes awry in movement disorders, but there is still so much more we do not understand.

You can learn more about deep brain stimulation for movement disorders like Parkinson’s disease through our recent webinar and by following the research Dr. Miocinovic and her team are pursuing at the Miocinovic Lab.

The American Brain Foundation is committed to supporting the next generation of brain disease researchers. By donating today you can help us achieve our vision of life without brain disease.

Learn what Dr. John Leddy says about the importance of getting a prompt diagnosis for a concussion, as well as how to reduce the severity of symptoms and the risk of serious long-term injury.

Between 1.6 and 3.8 million people report experiencing a concussion every year, with as many as 50% of cases going undetected. While concussions may seem relatively common, especially among athletes in high-contact sports, there can be serious long-term consequences of not seeking proper treatment. About one in five people who experience a concussion have prolonged symptoms, which are defined as symptoms that continue more than a month after the initial injury. This is often because they do not receive appropriate post-concussion care. 

We spoke with John Leddy MD, FACSM, FACP, FAMSSM, about the importance of proper post-concussion treatment, including what can be done after a concussion to decrease the severity of symptoms, promote quick recovery, and reduce the risk of serious long-term effects.

Dr. Leddy is a professor of clinical orthopedics, internal medicine, and rehabilitation sciences at the University of Buffalo School of Medicine. He is currently the medical director of the University of Buffalo Concussion Management Clinic.

What to Do After a Concussion

If you or someone you know experiences a concussion, the first week is critical for promoting recovery and reducing the risk of long-term symptoms. Here are Dr. Leddy’s key steps to preventing long-term brain trauma after a concussion:

1. Get evaluated by a doctor as soon as possible.

The most important thing to do if you or someone you know has suffered a head injury is to see a doctor immediately. The amount of time it takes to get a medical evaluation can be one of the biggest factors in the recovery process if you do in fact have a concussion. 

Dr. Leddy notes that “the faster somebody gets in [to see] a physician or provider who knows what they’re doing with concussion, the faster they recover.”

2. Scale back activity for the first 48 hours.

For the first 48 hours after a concussion, Dr. Leddy recommends skipping intense exercise and sports, as well as minimizing screen time as much as possible. After the first two days, ease into activity and immediately stop anything that causes symptoms to significantly increase.

Dr. Leddy says to avoid any activity that causes your symptoms to increase beyond a “mild” level. How do you tell if you’re experiencing more than a mild increase in symptoms? Dr. Leddy says that if, “on a 0-10 scale, [you experience] an increase of two or more points during the activity” compared to how you felt before beginning the activity, then you should stop and take a break. 

3. Find your exercise “sweet spot.”

Data shows that while you don’t want to overdo it, maintaining some healthy level of activity in the first week after a concussion is especially important for the healing process. This is another reason it’s important to monitor any increases in your symptoms during physical activity. Dr. Leddy notes that by doing so, you can find your activity “threshold”—the point up to which exercise is beneficial following a concussion. 

“The more that [a person] can exercise at that subthreshold level… [the faster] they tend to recover,” Dr. Leddy says. Work to find the right level of activity and be sure to hit that “sweet spot” throughout the first week.

4. Take regular breaks, especially if symptoms increase.

Just as you need to give your body time to resume physical activity, you’ll also need to ease your brain into mental activity. This is especially important for students and people with stressful jobs. During mental tasks, Dr. Leddy recommends taking scheduled breaks—such as every 15 to 20 minutes—and stopping if symptoms increase by more than two points on a 0-10 scale.

5. Rehabilitate concussion-related injuries and issues.

“We’ve learned that many concussions are accompanied by neck injuries,” says Dr. Leddy. “[This] shouldn’t be surprising, but it wasn’t realized until maybe a decade ago.” To help promote recovery after a concussion, you may need to receive care for related symptoms, including physical therapy for neck pain or vestibular therapy for balance problems.

Can Activity Help Minimize the Long-Term Effects of a Concussion?

In the past, individuals with a concussion were often told to rest in quiet, dark rooms. “It was sort of considered [forbidden] to have somebody do too much mental or physical activity soon after a concussion, because it typically reliably increases someone’s symptoms,” Dr. Leddy explains. “It was thought that… if you increased the symptoms even a little bit, you were harming the brain and delaying recovery.”

However, while working in sports medicine Dr. Leddy began to think about how doctors could more actively treat athletes who had experienced a concussion. He wondered if there was a way to maintain physical activity while experiencing a healthy, mild level of symptoms rather than restricting all activity and waiting for symptoms to go away. 

Dr. Leddy and his team modeled their approach on rehabilitation strategies for people who have recently had a heart attack. “If you take the principles of somebody who has heart disease, for example, and you want to rehabilitate that person from having heart disease or a heart attack, what do you do? You have a cardiac treadmill test—you have a stress test,” says Dr. Leddy. 

This type of treadmill test inspired Dr. Leddy’s Buffalo Concussion Treadmill Test (BCTT). The Buffalo Treadmill Test has become the standard of care for treating concussions among experts in the field, including primary care physicians and those involved in evaluating and managing athletes who experience a concussion.

“We started measuring blood pressure and pulse on the treadmill, and we came up with a way to assess how much [concussion] symptoms went up during exercise—and predictably, they did,” he says. When symptoms increased, the research team recorded the participant’s heart rate. They then instructed the person to exercise at 80% of that intensity—using this recorded heart rate as a guide—for 15 to 20 minutes a day, stopping if their symptoms went up more than mildly.

Dr. Leddy and his research partners tested this approach on people who experienced prolonged symptoms, including college-age athletes and older adults who had been injured at work, and found that it helped them recover from a concussion more quickly.

How Exercise Affects the Brain After a Concussion

How does this work? A mild traumatic brain injury or concussion disturbs the autonomic nervous system, which controls a person’s ability to breathe and pump blood throughout the body and brain. The autonomic nervous system adjusts a person’s body functions in response to environmental demands, such as exercise. Typically with increased activity, the brain is able to regulate blood flow, but after a concussion, this control of blood flow to the brain is poorly regulated, especially during exercise.

“Exercise—aerobic exercise specifically—treats the whole autonomic nervous system,” says Dr. Leddy. “We call it ‘exercise as medicine’ for concussion.” In his research studies, adolescent athletes who started an exercise protocol within days of a concussion recovered faster and had a 50% reduction in prolonged symptoms compared to those who were assigned a stretching program.

In recent years, the medical field, sports professionals, media, and the general public have paid more attention to the topic of concussions. Research is still uncovering information about diagnosis and treatment, and it will take time for new learnings to be implemented in clinical practice, at training facilities, and during sporting events. The American Brain Foundation will continue to support ongoing brain disease research and share important findings from experts in the field.

Stay updated on the latest news from the American Brain Foundation by following us on Twitter and Facebook. Only through research will we find cures for all brain diseases and disorders. Donate today to make a difference.

A newly approved drug called lecanemab is offering hope for people affected by Alzheimer’s disease. But what is lecanemab, and how does it slow the progression of dementia?

There are around 6.5 million people in the U.S. living with Alzheimer’s disease, and that number is increasing every year. Alzheimer’s disease is the most common form of dementia in older adults and the seventh leading cause of death in the U.S. Prior treatments have failed to slow the progression of the disease, leaving people and their families few options following a diagnosis. 

However, there are new reasons to be cautiously hopeful about treatment: The U.S. Food and Drug Administration (FDA) recently granted accelerated approval to the drug lecanemab. Currently being used for people in the early stages of Alzheimer’s disease, lecanemab appears to actually slow the progression of cognitive decline. 

While this is an exciting development for people living with Alzheimer’s and their families, it’s important to note that the drug is still being evaluated. This means that doctors can currently prescribe lecanemab, but the FDA has not finished fully evaluating its effectiveness and potential side effects. 

Additionally, lecanemab has been shown to cause certain adverse side effects in some people, so it’s not the best option for everyone. Below we answer some pressing questions about this promising new drug and explain what it means to be granted accelerated approval from the FDA.

What Is Lecanemab?

Marketed under the name Leqembi, lecanemab targets the progression of Alzheimer’s disease rather than simply alleviating some of its symptoms. It was granted accelerated approval by the FDA after the results of an 18-month Phase 3 trial were published in the New England Journal of Medicine in November 2022. The Phase 3 trial found that lecanemab reduced cognitive decline by 27%—a promising result for people in the early stages of Alzheimer’s disease.

How Does Lecanemab Work?

Lecanemab is a monoclonal antibody. These types of drugs work by introducing lab-made molecules into the bloodstream to act as substitutes for the body’s natural antibodies and immune cells that aren’t functioning properly.

In this case, lecanemab binds to amyloid beta proteins—the main component of the amyloid plaques (clumps of misfolded proteins) found in the brains of people with Alzheimer’s. These amyloid plaques eventually damage the brain, resulting in cognitive decline and dementia. By binding to amyloid beta proteins, lecanemab reduces the formation of these amyloid plaques, in turn potentially reducing some of the brain damage that causes Alzheimer’s symptoms.

What Does It Mean That Lecanemab Received Accelerated FDA Approval?

The FDA’s Accelerated Approval Program allows for faster approval of drugs designed to treat serious conditions where there is currently a lack of effective treatments available. The drug must be shown to clearly affect a specific marker or measurement of a disease—such as the reduction of amyloid plaques in the brain—that is likely to result in successful treatment outcomes. This is different from the usual requirement for approved drugs to show that they definitely result in a measurable change in symptoms.

Once accelerated approval is granted, drug companies must still conduct studies to confirm the expected benefit of the medication—in this case, slowing the progression of cognitive decline in people with Alzheimer’s disease. If clinical trials confirm that the drug performs as expected, then the FDA grants traditional approval. If not, its accelerated approval may be revoked and the drug can be removed from the market.

The accelerated approval of drugs can be life-changing for people with previously untreatable and incurable diseases like Alzheimer’s. Earlier approval gives more people access to treatments that may significantly affect their symptoms and quality of life.

Potential Risks and Serious Side Effects

It’s important to note that drugs in the accelerated approval stage can have risks and side effects that have yet to be fully studied or understood. Not all people with Alzheimer’s will be good candidates for lecanemab.

Lecanemab’s Phase 3 trial revealed adverse side effects for 14% of those who took the drug, compared to 11.3% in the placebo group. The most commonly reported serious side effects were nausea, vomiting, and changes in blood pressure, as well as amyloid-related imaging abnormalities (ARIA) shown on MRI scans. 

ARIA usually presents as brain swelling, sometimes accompanied by bleeding in the brain or on the brain’s surface. Some people experience dizziness, confusion, nausea, headache, seizures, and vision changes, though there are not always obvious symptoms. ARIA can occasionally cause hospitalization or lasting impairment. There have been three deaths linked to lecanemab’s extended trials, with the FDA continuing to evaluate the potential for serious side effects.

Next Steps in Alzheimer’s Treatment

The price of lecanemab is another concern. It currently costs $26,500 per year, and there is no guarantee that insurance companies will cover it. The Center for Medicare and Medicaid Services is currently reviewing lecanemab in light of its accelerated approval, but says that for now it will be covered only for people enrolled in registered clinical trials.

Despite the potential drawbacks, lecanemab’s accelerated approval is still an exciting development for people with Alzheimer’s disease. While it’s not a cure, lecanemab may be able to positively impact the lives of people in the early stages of the disease.

“These peer-reviewed, published results show lecanemab will provide patients more time to participate in daily life and live independently,” says the Alzheimer’s Association. “It could mean many months more of recognizing their spouse, children, and grandchildren.”

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Cerebral small vessel disease (CSVD) is common among older adults, but its causes and connections to other brain diseases like Alzheimer’s aren’t well understood. Julie shares her experience of getting a diagnosis, struggling to find treatment, and the daily challenges of living with CSVD.

Julie Turner was 54 when she received a life-changing brain disease diagnosis. For years prior, Julie experienced problems with her memory and thinking clearly. After decades of working in healthcare, she started forgetting the names of basic equipment and how to operate machines she had previously taught others how to use. Eventually, Julie’s condition worsened and began to impact her movement and ability to speak. After several misdiagnoses, doctors finally concluded she had cerebral small vessel disease (CSVD). Only after getting an accurate diagnosis could Julie start effectively treating her condition.

We spoke with Julie about how CSVD has impacted her life, from her initial struggle to get a diagnosis to searching for effective treatments and learning how to manage her symptoms.

What is Cerebral Small Vessel Disease (CSVD)?

CSVD is an umbrella term for a variety of conditions resulting from damage to small blood vessels in the brain. In most cases, CSVD is caused by the narrowing or obstruction of small blood vessels in the brain due to inflammation and/or a buildup of misfolded proteins called plaques. This chronic damage can starve brain cells of oxygen and cause internal bleeding, which in turn can damage other nearby brain cells. 

Doctors know that impaired blood flow to the brain caused by CSVD can result in vascular dementia. However, recent research shows that CSVD is also associated with a higher risk (or increased severity) of other forms of dementia, including Alzheimer’s disease. More research is needed to fully understand the connection between these two diseases.

Early Symptoms of CSVD

Mild, early cases of CSVD tend to not have especially noticeable symptoms, and many of the early symptoms people do notice are often easily confused with the normal effects of aging. This presents a challenge—many people do not get a diagnosis until their condition has progressed to the moderate or severe stages and more significant brain damage has occurred. Later stages of CSVD can involve a variety of symptoms, including cognitive impairment and dementia, issues with walking and balance, depression, strokes, and nervous system problems (such as slurred speech and difficulty swallowing).

In Julie’s case her symptoms started with difficulty thinking clearly, trouble with her memory, and being tired more than usual. As her condition progressed, she began to experience nervous system issues, trouble walking, strokes, and even the early stages of dementia. Perhaps the most challenging part for Julie has been her struggles with speaking, reading, and writing. “Communicating is my biggest problem with this disease,” she says. Only after getting a correct diagnosis could Julie effectively address some of her symptoms.

Getting a Diagnosis and Common Misdiagnoses

CSVD is generally diagnosed using an MRI scan to check the brain for bleeding of the small blood vessels, damage to white matter, and evidence of small strokes. Because the majority of people experiencing serious CSVD symptoms are usually in their 70s or older, younger people often have a harder time getting a correct diagnosis. That’s exactly what happened to Julie. 

She explains, “I was initially diagnosed with fibromyalgia, and then they decided it was MS [multiple sclerosis]. I was actually treated for MS for a short time because I was declining so quickly.” 

At the MS clinic, doctors eventually realized her condition was vascular (impacting the blood vessels), and something clicked for Julie. “My grandmother died of vascular dementia. My grandfather died of Alzheimer’s,” she says. “So I’ve always in the back of my head thought, ‘there’s a possibility I’m going to get one of those.’” After years of living with CSVD, Julie was finally diagnosed at the age of 54.

How Do You Treat CSVD?

Current treatment options for CSVD are limited. They generally focus on reducing risk factors and avoiding or delaying complications like stroke and dementia. Individuals each have different risk factors, so personalized treatment regimens are the most effective. Treatment may include medications to reduce cholesterol, regulate glucose levels, and lower high blood pressure. Healthy lifestyle habits such as regular exercise, eating nutrient-rich foods, and quitting smoking are often recommended as well. Some symptoms, such as nervous system issues and depression, may be addressed with specialized therapies.

Julie currently takes several medications, including a blood thinner, blood pressure medication, and cholesterol medication. She’s been working with a speech therapist who has been helping her regain some of the language skills she lost in the years before she got an accurate diagnosis. “My speech is getting better,” says Julie. “A year ago, I couldn’t have said a full sentence. I’m relearning how to read, write, and talk.” She also sees a therapist for mental health support.

The Challenges of Living With CSVD

Julie faces many difficulties navigating life with CSVD. Her trouble thinking clearly and communicating makes it hard to express herself effectively when speaking with doctors and specialists. Problems with walking and balance also have a daily impact, making it hard to exercise and spend time outdoors. The additional risk of falling also means she must avoid living situations with stairs and hardwood floors.

For Julie, one of the most challenging consequences of CSVD was no longer being able to work. Julie entered the healthcare field as a young, single mother, working her way through school and eventually becoming a nurse. Her career brought her joy for decades, and she loved being able to help people every day. But CSVD’s impact on her memory and thinking skills eventually meant she couldn’t safely do her job. 

“I loved my job for 40 years and was forced to quit,” she says. “That was hard for me, to lose my whole career.”

It’s vital for people with brain diseases like CSVD to have a strong support network. Julie notes that she lost some people in her life due to the added challenges her condition created. This led not only to more difficulties navigating daily life and care, but also worsening depression. Feeling isolated and depressed is unfortunately all too common for people experiencing chronic illness, and it’s essential to be able to rely on caregivers, family, friends, counselors, and support groups.

Why More Research is Crucial for Brain Diseases Like CSVD

Julie wishes that we understood more about how CSVD works and that there were better resources for people like her trying to navigate various symptoms and care. Much of the information that is available focuses on people in older age groups with later stages of the disease, but she hopes that in the future there will be more studies focusing on younger people with early-onset symptoms. 

“I wouldn’t wish this on anyone. If they could stop it or slow [the progression], or find it when you’re younger and prevent it from coming on so early… I don’t know anyone who wouldn’t want that to happen,” Julie says. Further studies can also educate people and help spread awareness about what CSVD looks like in the early stages, aiding in earlier diagnosis and treatment.

Because CSVD shares symptoms—and potentially causes—with other neurodegenerative brain diseases like Alzheimer’s, Parkinson’s, and MS, a discovery related to one disease can have a ripple effect on treatments and diagnosis for all the others. That’s why ongoing research across the full spectrum of brain diseases and disorders is so important. “If you cure one [disease], it gives everyone else hope,” says Julie. “And a lot of times with this disease, that’s all you have.”

The American Brain Foundation is committed to finding cures for brain diseases. Donate today to make a difference. With your help, we can all experience life without brain disease.

Dr. Barnett-Tapia discusses how funding from the American Brain Foundation opened up new opportunities for patient-centered research.

The American Brain Foundation is dedicated to finding new treatments, better diagnosis methods, and cures for all brain diseases. With the help of the American Academy of Neurology, our Next Generation Research Grants provide support for a wide range of innovative research projects from early-career researchers.

In 2012, Carolina Barnett-Tapia, MD, PhD, associate professor of neurology at the University of Toronto, received a grant funded by the American Brain Foundation. Her research project worked to identify what people with myasthenia gravis found most important about their symptoms and resulted in the development of a new symptom evaluation tool that incorporates a patient’s own perspective into clinical assessments. 

We spoke with Dr. Barnett-Tapia about how her early American Brain Foundation-funded project launched her career as a researcher and provided crucial information on patient-centered care. Her research has provided valuable insights on why it’s important to include the patient’s voice in research and treatment plans, as well as unlock possibilities and new discoveries on future treatments.

Dr. Barnett-Tapia’s responses below have been condensed and edited for clarity.

Why were you inspired to study the brain?

I love neurology. I always thought the nervous system was fascinating and incredible. Our brain—and the spinal cord and nerves—allows us to move, to function, to think. It’s truly the core of what makes us, us. I work with nerves and muscles that relay information to and from the brain. I see how important it is for patients who have diseases that affect parts of the nervous system to have new treatments and new therapies that can make their lives much better, as well as relieve suffering and improve functionality.

What specific issue is your research trying to address for patients?

My research is focused on understanding what matters to patients the most, identifying those values and considerations, and making sure that new treatments are actually improving the important things for patients. A lot of my research is also focused on understanding what the most impactful symptoms are for patients in their daily lives. Asking patients what they consider important allows us to incorporate those aspects into research, new treatments, and clinical practices to improve patients’ lives.

Could you elaborate on the role of the patient’s perspective in your research? What kinds of insights did you discover?

We learned that clinicians and patients have different views. What clinicians find important and what patients find important come from different perspectives. But we’ve also learned that there are things we can do [to bridge this divide]. Every time we interview patients and do patient-centered research, we focus on the patient’s perspective and experience. We also now routinely ask patients in our clinic and studies if they’re satisfied with their treatment and symptom management. 

Even if we’re experts on a disease, no one is as much of an expert as the patients who live with it. Through this research, we learn about what patients find relevant that we hadn’t thought about. I find that so enriching as a clinician and a scientist—to be able to build on that knowledge from patients and try to bring it to the table in clinical trials or clinical practice.

What did your American Brain Foundation-funded Next Generation Research Grant enable you to work on?

This award allowed me to devote time to interviewing patients in order to gain knowledge about the impact of neurologic diseases on their lives. So I sat with patients and talked to them for an hour or two about their experience having this disease. It allowed me to take time off clinical work to really gain knowledge about the impact of brain disease in patients’ lives and come up with tangible ways to put numbers to that experience.

It’s hard to think about putting a number to something so personal, because everyone is different and has different experiences. But what we’ve tried to do is develop a tool to help us standardize [the patient care process], and now we’ve been able to use these insights in clinical practice. So when we see patients in the clinic, we can ask them the questions and measure the symptoms that we know matter to them.

How did this early American Brain Foundation-supported research open doors for additional research funding or future research projects? 

I cannot put into words how much the American Brain Foundation award changed my life. I do not know how successful I would have been without this award. I did not have a lot of research experience when I got the award; I was just learning. I was also not trained in North America, so I didn’t have a lot of that background that allows you to get more funding. 

This opportunity really opened doors for me, because it’s a big thing to be supported by the American Brain Foundation. After I got the award, I could see that people were noticing that my work had been recognized by the Foundation. I have been very lucky to be funded since and have been successful in other endeavors.

Additionally, the fellowship opened all these doors for me not just in terms of funding but also through a whole network of mentorship. With the American Brain Foundation, you are part of this cohort of amazing, talented clinicians and scientists, and this community really helps each other. Their goal is to help you succeed as a researcher. Even today, I correspond with some of the mentors in the program. They still invite me to events and offer advice if I need, and I think that’s really priceless.

How would discovering treatments or a cure for one brain disease impact other diseases?

So even though as a clinician you may focus on a very specific number of diseases, from a scientific perspective, some of the methods and approaches we use can be applied to other diseases. My focus has been on understanding patients’ views and preferences, as well as developing measures and outcomes—things we can actually use in clinical trials to see if medications are working. That translates to any other disease. 

The methods and the way we come to these conclusions can certainly be used for different diseases. If we do well in one field, some of our colleagues from other fields may say, “Oh, that’s a really interesting approach. Can we use this approach for this different disease?” This really helps everyone because in science, as we move forward, it’s like stepping stones. One discovery helps everyone else get new ideas and bring things that have been working for one disease to help battle another one.

What do you hope your research will help accomplish for patients? 

My hope is that my research will help bring patients’ views and perspectives to the table so that the treatments we’re developing and using are those that really have value for patients and are really improving the things that are meaningful for patients. For instance, sometimes as clinicians, we are focused on something in our exam or testing, but often patients don’t care about those things. Patients want to be able to spend time with their families, they want to be able to work, they want to be able to do their hobbies—they want to be able to have a normal life.

The other thing is that by learning more about what patients value and what’s important to them, we can use that information for other parts of the research and treatment process. For instance, we can help make sure that the voice of the patient is included in conversations about what medications are funded and approved. So that would be my goal—keeping the patient perspective in mind across the development and approval of new therapeutics.

How far has research come since you began your career, and what are the most exciting discoveries and developments you’ve seen since you entered the field?

There are too many to count. We are treating things today we couldn’t treat before. In my specific field, we are treating diseases—like genetic disorders—that were untreatable even a few years ago. It’s really amazing what we have accomplished. The research across all fields of neurology is just amazing, and this is why we need more research—to keep going and really expand beyond the diseases that we are currently able to treat.

In the past seven years, we’ve had around 15 drugs or interventions approved to treat neuromuscular disorders. Between 1955 and 2010, we had less than 10. So in seven years, we’ve had multiple times the number of medications approved specifically for nerve and muscle disorders than we had in the past 60 years. We’re seeing three to four new drugs approved every year. That is truly amazing. 

One of the biggest examples is treatment for spinal muscular atrophy (SMA). This is a genetic disease that affects the nerves, and it can affect babies from birth and young children, most commonly, although sometimes it presents later. These were children that used to not be able to walk or sit, many of them with very early death—it’s a devastating genetic disease that had no treatment. Now we have treatments that, especially if they’re given early while someone is a baby, they can [restore movement] and achieve the standard milestones of a healthy child without SMA that was unthinkable years ago. That’s research at work.

Why is it so important to fund research?

Research is a massive undertaking, and it cannot happen without funding. To produce good research, we need funding, and funding through usual sources [like the NIH] is very limited. Unfortunately, we always need more funding for research—the only way research has advanced so much [in recent decades] is through philanthropy and donations.

Also, there are many rare neurologic diseases that affect a very small number of people but are quite severe. For those diseases, we probably know 10% of what we need to know to cure them, but we’re way above where we were in the past—even just 5 years ago. It’s been so accelerated, and as we continue with our research, we’re going to come closer to curing all brain diseases.

I got my award over 10 years ago. We have to think about the next generation of people who will take over and bring in new ideas—so funding is also about training new people, and about getting new people excited about the questions that we’re pursuing in research. That won’t happen without these types of programs that really help researchers who are just starting out.

Why are organizations like the American Brain Foundation so important? 

The American Brain Foundation is important because it is dedicated specifically to research that will help us develop treatments for people with brain and nervous system diseases. The other reason the Foundation is so important is that it’s committed to training new generations of clinicians and scientists, as well as building a network so that this work is sustainable in the future. The way I see it, the American Brain Foundation is a community, and the goal is to maintain and grow this community for the benefit of patients and their families. I think that’s pretty unique. 

The American Brain Foundation is invested in people, and at the end of the day, what research needs is people—it’s people who do the work and drive research, and it’s people we’re treating. This investment in people whose lives are devoted to brain and nervous system diseases is really crucial.

Research is what allows for the discovery of cures for all brain diseases. Investing in the people behind these studies and programs is what allows people living with brain disease to receive the treatment they need and deserve. Through research and understanding the patient’s perspective, we can fulfill the American Brain Foundation’s mission of discovering new treatments and cures for all brain diseases.

The American Brain Foundation is committed to supporting the next generation of brain disease researchers. By donating today you can help us achieve our vision of life without brain disease.

Learn how our philosophy of Cure One, Cure Many helps us uncover important connections between brain diseases and drives our approach to research.

At the American Brain Foundation, our support for brain disease research is driven by our philosophy of “Cure One, Cure Many.” This is based on our understanding that brain diseases—both causes and symptoms—are often interconnected, and that deepening our understanding of one disorder will unlock critical insights into other, related diseases. When we fund research across the whole spectrum of brain diseases and disorders, we increase our chances of developing these key insights and research breakthroughs.

Below we answer some common questions about what Cure One, Cure Many means and how this philosophy guides our efforts to achieve our vision of life without brain disease.

What does Cure One, Cure Many mean?

We know that all the different parts of the brain are connected. This means, for example, that diseases impacting one area of the brain often share causes or symptoms with others. 

By investing in research that can help us find these key connections between brain diseases, we create a foundation on which future researchers can build. This leads to more targeted avenues of research, the ability to apply elements of certain treatments to a wider range of diseases, the discovery of new biomarkers to aid in diagnosis, and ultimately more cures. 

Why is Cure One, Cure Many so important to the American Brain Foundation?

We have seen how brain disease irrevocably alters peoples’ lives—not just the millions of people impacted by brain diseases and disorders every day, but also their families, caregivers, and communities. That’s why we invest in research initiatives with the widest possible impact. One discovery can have a ripple effect that leads to new or improved treatments, better diagnosis methods, and cures for a range of brain diseases.

Doesn’t finding cures take a long time? 

Finding cures for brain diseases is a slow, rigorous process, but along the way we often uncover new insights that lead to new treatments, testing options, and technology. So as we’re pursuing a cure for one brain disease, we take significant steps forward in the research and treatment of many others. 

In fact, this is one of the reasons Cure One, Cure Many guides our investment in research: For each disease that we study, we gain knowledge that will improve the quality of life for millions of people living with other brain diseases as well.

How does Cure One, Cure Many help me? Will finding a cure or improved treatments for Alzheimer’s help my Parkinson’s disease?

We understand that it’s frustrating to see advancements in diagnosis and treatment for other brain diseases while living with a condition for which there’s currently no cure. However, advancements in one disease area can create the foundation for critical steps forward in others.

One research area with the potential to impact diagnosis and treatment for many different diseases involves neuroinflammation. Researchers are currently investigating the connections between neuroinflammation and neurodegenerative diseases like Alzheimer’s, Parkinson’s, and multiple sclerosis (MS). While inflammation is an important part of the brain’s immune response, it has also been linked to brain cell death and the progression of neurodegenerative diseases like Parkinson’s and Alzheimer’s. Neuroinflammation may also play a role in the brain’s inability to repair myelin—the protective layer around nerve fibers—in MS.

The more we understand the many complex ways that inflammation affects the brain, the closer we will get to understanding its role in neurodegeneration, and the greater our chances of developing early diagnosis methods and treatments.

“Cure One, Cure Many means that we are saving lives. We have the opportunity to see the first survivor of a rare brain disorder [like] ALSP. It’s important for us to find treatments and cures, not just for ALSP, but for all brain disorders, because we’re all in this together.”
— Kim Cade, whose brother Jeff was diagnosed with ALSP

“I’ve been a big proponent of sort of de-siloing the field. As I often say, Cure One, Cure Many is something that is extremely accurate. A huge amount of clinical and basic research is now showing that the underpinnings [of various diseases] in some ways are related and we can capitalize on discoveries in one field and bring them to another.”
— Frances Jensen, MD, FACP, FAAN
Professor of Neurology and Chairman of Neurology at the Perelman School of Medicine at the University of Pennsylvania; Co-Director of the Penn Translational Neuroscience Center

How do you know Cure One, Cure Many actually works? 

So many historical advancements in brain disease treatment have been made possible through research. We have seen countless examples of one research discovery creating a ripple effect across the field, impacting the diagnosis and treatment of other diseases.

For example, the discovery in the 1980s of Lewy body disease (LBD) as a distinct disease separate from Alzheimer’s has led to a deeper, more complex understanding of the many different types of dementia. We now understand LBD as actually referring to two diseases: dementia with Lewy bodies (which begins with dementia symptoms) and Parkinson’s disease dementia (which first presents as symptoms of Parkinson’s disease).

Additionally, research sometimes yields a particular method of treatment that can be applied to many different diseases. In 2019, the American Brain Foundation’s Scientific Breakthrough Awardee, Jerry Mendell, MD, discovered a groundbreaking treatment for spinal muscular atrophy (SMA), a previously untreatable and otherwise fatal disease. Dr. Mendell’s discovery was the result of years of research into gene therapy, and researchers are now building on this first-of-its-kind treatment to develop similar therapies for Duchenne muscular dystrophy (DMD) and limb-girdle muscular dystrophy.

Discoveries like these lead to more clearly defined targets for future research and enable us to better understand how to treat all brain diseases.

What is the Foundation doing to support Cure One, Cure Many?

The American Brain Foundation recently awarded a Cure One, Cure Many Award for the early diagnosis of Lewy body dementia (LBD). The Foundation granted $3 million to a team of researchers from the Mayo Clinic, the University of Pennsylvania, and the University of North Texas Health Science Center to identify a blood-based biomarker that will aid in the diagnosis of LBD. This award is offered in partnership with the Alzheimer’s Association, The Michael J. Fox Foundation for Parkinson’s Research, and the American Academy of Neurology. 

Additionally, our Next Generation Research Grants program funds innovative research from early-career investigators across the full spectrum of brain diseases and disorders. We are currently supporting research projects in ALS, Alzheimer’s and dementia, Parkinson’s disease, multiple sclerosis, stroke, and many other disease areas.

We also recently launched a research initiative to better understand neuroinflammation as an underlying mechanism of brain disease and brain health. This understanding will allow us to more precisely target symptoms and causes of diseases like Alzheimer’s disease, Parkinson’s disease, ALS, stroke, epilepsy, and many more.

How can I support Cure One, Cure Many?

Every donation to the American Brain Foundation supports whole-brain research across the full spectrum of brain diseases and disorders. Looking for ways to offer ongoing support? Our monthly Brain Squad members provide the sustained commitment we need to fund research that will eventually uncover more advanced treatments and cures.

You don’t have to make a big donation to make a difference, either. You can help us by starting a Facebook fundraiser or personal fundraising campaign and asking your friends and family to donate. Spreading awareness of brain disease and the importance of research is crucial to finding cures. If you or a loved one has been impacted by brain disease, share your story today.

Learn more ways to support brain disease research and our commitment to Cure One, Cure Many—and help us take the next steps toward our vision of life without brain disease.

Dr. Chhatwal discusses his research on Alzheimer’s disease and how funding from the American Brain Foundation played a pivotal role in his early career.

At the American Brain Foundation, we know that research is the key to discovering new treatments and cures for all brain diseases and disorders. This is why our Next Generation Research Grants are designed to promote innovative projects from early-career investigators that contribute to the future of brain disease research.

Jasmeer Chhatwal, MD, PhD, MMSc, Associate Professor of Neurology at Harvard Medical School, was the recipient of a Next Generation Research Grant from the American Brain Foundation in 2012. He now directs the Biomarkers of Neurodegeneration, Inflammation, and Cognitive Decline (BioNIC) laboratory at Massachusetts General Hospital, where researchers are working to develop blood tests that could enable earlier and more effective diagnosis of Alzheimer’s disease. 

We spoke with Dr. Chhatwal about how his 2012 research grant influenced his career as a researcher and how his American Brain Foundation-funded project informed his later research on Alzheimer’s disease. He also discusses his hope for the future of Alzheimer’s treatment, how far research has come in the past 10 years, and why funding is so important for patients and clinicians everywhere.

Dr. Chhatwal’s responses below have been condensed and edited for clarity.

What inspired you to study the brain?

I started college as an architect—then I took a neurobiology course when I was a sophomore, and ever since, I’ve been a neuroscientist. I definitely have personal touchstones to brain disease, and I think that has helped me along the way. My grandfather died of a stroke. My grandmother had a condition called cerebral amyloid angiopathy, which is related to Alzheimer’s disease, and died of an intracranial hemorrhage. My other grandmother, unfortunately, has Alzheimer’s disease. 

So there’s a lot in my family that brought me to the table, but I’m fascinated by it. It’s obvious that Alzheimer’s disease is hard to treat, but it’s so common and touches almost everyone’s life. There’s so much room for improvement in the way we treat it. To me, it’s always been very, very compelling, emotionally and intellectually.

What specific issue is your research trying to address? 

For patients, the idea is to accelerate the development of treatments for Alzheimer’s disease. We have a few symptomatic therapies that are available, there are a few lifestyle changes we can suggest, but we lack drugs that are potent enough to change the course of the disease as of yet. That’s really beginning to change. There’s a lot of hope in the field that within the next year or two, we’re going to have some new drugs on the market, and that will lead the way to more and more effective treatments for Alzheimer’s disease. 

People sometimes think the cognitive decline seen in Alzheimer’s disease is just a part of the aging process—perhaps an accelerated version of that—but what we’ve learned over the years is that they’re actually very different things. The normal aging process puts you at higher risk for cognitive decline, but it’s not inevitable that as people get older, they’re going to have cognitive decline. 

My research is really intended to understand how to separate [cognitive changes due to] the normal aging process from Alzheimer’s disease and to provide tools and targets for future drug development.

How would better understanding biomarkers for Alzheimer’s enable us to improve treatment and diagnosis of the disease?

We need to identify people [at high risk for Alzheimer’s] early on, and we need to know what sort of things are absolutely central to the disease process that we can measure when we give medication. When we try to find a medication that changes the course of a disease, we need something called a biomarker. This allows us to know whether we’re using the drug at a proper dose, whether we’re engaging the target we want to engage, and over time, especially in a disease that evolves over years, whether or not we’re making progress.

What other factors do you consider when thinking about treatments for Alzheimer’s?

Another thing is that along with developing drugs, it’s important to have behavioral interventions that reduce the chances of developing Alzheimer’s disease in the first place. So we try to look at potentially modifiable risk factors. The ones that seem most prominent in terms of cognitive decline are things like elevated vascular risk factors, changes in sleep, and physical activity level. Those are the things we focus on the most, and all of them seem to have some sort of contribution to the likelihood that someone’s going to show cognitive decline.

Can the discovery of a certain treatment or cure for Alzheimer’s help with other diseases? 

Yes. There are many different types of dementia, and many of them involve different types of protein buildups. If you develop techniques to identify specific proteins [responsible] for Alzheimer’s disease, some of those same techniques can also be applied to other diseases that involve protein buildups.

It’s also the case that as we treat Alzheimer’s disease, we also treat another condition called cerebral amyloid angiopathy, which frequently co-occurs with Alzheimer’s disease. It’s a very frequent cause of hemorrhagic stroke and can be a very serious disease in its own right. So that’s another way we can make a difference in other diseases. 

Potentially modifiable risk factors like lack of exercise, smoking, and sleep disruption are really important for reducing the emergence of cognitive decline, but they’re also very important for reducing the risk of stroke and heart disease. So the idea is to develop technologies that have a broad reach in Alzheimer’s disease and also beyond—that can be used in clinical trial settings and to reduce risk factors for [conditions like] heart disease and stroke as well.

What do you hope your research will do to help patients? What do you want people living with Alzheimer’s to know? 

Brain diseases are difficult to treat, but it’s not impossible. There are two phases [to research]: There’s understanding and there’s developing treatments. Both can advance at the same time, and I think that’s what we’re seeing right now. The better our understanding is, the more effectively we can target the disease.

I think Alzheimer’s disease is one of the most feared complications of aging. Individuals with Alzheimer’s disease lose a lot of the cognitive capacities they identify with their own personality and that allow them to meaningfully interact with their families. This also creates a huge burden for caregivers. Right now, there are over 16 million caregivers for Alzheimer’s disease patients in this country and over 5 million people that are affected. It’s one of the most pressing public health emergencies of our time.

But there’s good news on the horizon. There’s been a lot of progress in the last 10 years in Alzheimer’s disease research, and we’re starting to see that bear fruit in terms of new therapies and new approaches. For my patients, my hope is to give them more time with their families and their loved ones, and hopefully to reduce the caregiving burden on families as well.

How far has research come since you began your career? What kinds of exciting discoveries and developments have you seen since you entered the field?

The ability to diagnose Alzheimer’s disease has advanced tremendously with the development of amyloid PET scans, tau PET scans, and now blood-based biomarkers. It’s revolutionized the field. Even within the last two years, we’ve seen two drugs that have shown signs that they can actually slow down cognitive decline. That’s amazing! I think that’s the first time in human history where we’ve actually had the possibility of disease-modifying therapies for a common disease like Alzheimer’s disease. 

This phase of Alzheimer’s disease therapeutics that we’re seeing now is targeting the amyloid protein. We’re going to start to see new therapies attacking the tau protein and reducing people’s risk overall by intervening in lifestyles and behaviors. My hope is that in a few years we’ll be able to do combination therapies, trying to treat the tau protein at the same time we’re reducing people’s risk of vascular disease.

So, it’s a very, very different field than it was 10 years ago. There’s a lot more hope and certainly a lot more understanding. We’re starting to see the fruits of [research] with new treatments that hopefully we’ll see very soon in clinics.

What did your American Brain Foundation-funded Clinical Research Training Fellowship enable you to work on? 

The core objective of my fellowship was to try to identify changes in brain networks that distinguish early Alzheimer’s disease from normal age-related changes. That work created a foundation that allowed me to work with two groups. 

One result of my fellowship has been my work with the Harvard Aging Brain Study, which is a long-running study that looks at older adults, some of whom are aging normally and some of whom have preclinical Alzheimer’s disease and eventually develop symptoms.

The second group is the Dominantly Inherited Alzheimer Network. Unfortunately, there are about 300 different genetic variants that can lead to Alzheimer’s disease at a very young age. There’s an international consortium to study these rare genetic variants. It’s rare for people to develop Alzheimer’s at a young age, so we don’t see age-related changes [in these individuals]. Looking at some of those contrasts allows us to focus on brain networks that distinguish aging from early Alzheimer’s disease. The idea is to develop a tool where we can identify people who are at risk.

What kinds of insights or discoveries did this research lead to?

The Harvard Aging Brain Study has been instrumental in developing new tools to look at cognitive decline and to develop PET scans and PET imaging as a core feature of clinical trials. I think that’s been one of its major impacts. Another thing it allowed us to do is really show the effect of elevated vascular risk factors together with even small amounts of amyloid buildup in the brain—that’s been one of my contributions in that study.

The Dominantly Inherited Alzheimer Network has been instrumental in identifying key core mechanisms of Alzheimer’s disease, identifying new drug targets, and looking at changes in the blood and cerebrospinal fluid that are indicative of early Alzheimer’s disease-related changes. 

So both groups have been very influential, and I think our internationally known studies have made important contributions.

How did your early American Brain Foundation-supported research open doors for additional research funding or future research projects? 

In several ways. [As an early-career researcher] you need dedicated time to develop your own ideas and to develop enough preliminary data that you can convince institutions like the National Institutes of Health (NIH) and other funding agencies to help your career development. The project the American Brain Foundation funded provided preliminary data for my career development award through the NIH. 

Since the first day, the project has just grown exponentially, and now we’re fortunate to have three R1-level grants to support our work. The R1 is the central and most common award for independent research funding given out by the NIH. It’s sort of a benchmark grant for someone transitioning from being a supported investigator working with other people’s data to developing your own independent ideas and developing a research program of your own.

[The American Brain Foundation grant] was instrumental in terms of creating the time and helping me develop the ideas and the preliminary data that allowed us to do what we do today.

Why is funding research so important?

It’s important to fund research because there are diseases [like Alzheimer’s] that cause tremendous suffering. I think diseases like Alzheimer’s have been around for as long as humans have been around. When we see something that causes so much suffering, there’s a tendency to say, “The brain is too complex. We can’t treat it. We can’t change the course of this. This is part of aging.” But we’ve realized over time that we can intervene. 

We’re starting to see the first interventions in human history against the buildup of the amyloid protein in the brain. But the way these things happen, the “behind-the-scenes” of research and technology development, all of that requires the concerted effort of large teams of scientists. It requires funding clinical trials that allow us to see whether or not particular treatments work, whether our understanding is correct, and whether the disease mechanisms we think are present are actually present. That’s how we find ways of altering the course of these very common and very burdensome human diseases—and the only way that gets done is if we put our effort, time, and money into it.

Why are organizations like the American Brain Foundation so important to supporting research?

I think the American Brain Foundation and the American Academy of Neurology are leading lights in terms of informing people about the importance of treating brain disease and that there’s hope to treat these very difficult-to-treat diseases. We need to encourage young, creative researchers to come into the field and apply their effort, time, and intellectual powers in new and innovative ways to problems that are really difficult to address.

So, in that respect, it’s not only [providing] hope, but actually enacting hope in order to understand and treat disease—engaging the people who can actually make that happen is the importance of the American Brain Foundation.

The American Brain Foundation is committed to supporting the next generation of brain disease researchers. By donating today you can help us achieve our vision of life without brain disease.