Can pesticides and air pollution cause Parkinson’s disease? Learn about environmental factors linked to Parkinson’s and how reducing harmful chemicals may help prevent the disease.

The prevalence of Parkinson’s has doubled over the past 25 years and is projected to double again by 2050. Over the same 25-year period, disability due to Parkinson’s disease has increased by 80% and Parkinson’s-linked deaths have increased by 100% — outpacing every other neurologic disorder globally. With the skyrocketing impact of this disabling disease on millions of people worldwide, research into prevention and cures is critical.

We hosted a discussion with Ray Dorsey, MD, David M. Levy Professor of Neurology and director of the Center for Health and Technology at the University of Rochester Medical Center, to discuss one surprising and under-researched possible cause of Parkinson’s disease: toxic environmental factors like pollution and pesticides.

Reframing Parkinson’s as a Preventable Disease

Since the completion of the Human Genome Project in 2003, researchers have seen leaps forward in early diagnosis for a number of brain diseases linked to genetic causes. However, Dorsey notes that diseases like Parkinson’s do not seem to be strongly linked to genetics and are not likely to be inherited.

“Only about 15% of people with Parkinson’s have a family history of the disease, and only about 15% of people with Parkinson’s have an identifiable genetic risk factor,” says Dorsey. “[Additionally], most people who carry those genetic risk factors will not go on to develop Parkinson’s disease. So what is causing Parkinson’s?”

Dorsey thinks that while genes may play a small role in Parkinson’s risk, the disease is largely caused by environmental factors within human control. Specifically, exposure to high levels of pollution as well as chemicals like certain pesticides and industrial cleaning products play a large role in a person developing Parkinson’s disease.

This means Parkinson’s disease could be preventable if we can reduce exposure to these chemicals and other environmental risk factors. For this reason, Dr. Dorsey argues we should be putting many more resources into prevention — both in researching how environmental toxins like pesticides contribute to the development of Parkinson’s and in reducing and ultimately eliminating the use of these harmful chemicals. 

Air Pollution and Neurologic Disorders

Recent research studies have linked air pollution with brain disease, but Dorsey argues this is still an under-researched topic with serious implications for our understanding of multiple diseases, including Parkinson’s. He notes that the rise in Parkinson’s cases over the past century has often corresponded with increased pollution in large urban areas. In fact, the earliest descriptions of Parkinson’s by English researchers in the early 1800s coincided with a drastic increase in the amount of smog and air pollution in London. 

“Areas of the world that are undergoing the most rapid industrialization, like China and India, have the fastest increasing rates of Parkinson’s disease,” says Dorsey. “The areas of the world that are most industrialized, like the United States and Canada, have the highest rates of Parkinson’s disease, while the areas that are least industrialized, like sub-Saharan Africa, have the lowest rates of the disease.”

Even with current clean air and emissions laws, studies have found that 40% of people in the U.S. still breathe unhealthy air, and 95% of the global population is exposed to pollution levels above WHO guidelines. 

Additionally, events like the wildfires in Canada last year can also spread harmful levels of pollution across many miles of airspace. “In fact, air pollution in New York City this summer reached the levels of 1800 London [due to the Canadian wildfires],” says Dorsey. 

Pesticides and Other Harmful Chemicals Linked to Parkinson’s

In addition to air pollution, Dorsey identifies two types of chemicals that have been strongly linked to Parkinson’s: pesticides like paraquat, and cleaning chemicals like trichloroethylene (TCE).

Paraquat and Parkinson’s

Paraquat is a pesticide that has been linked to a 150% increased risk of Parkinson’s disease. It has been banned in over 30 countries but is still in widespread use in the U.S. Additionally, studies have shown that farmers exposed to pesticides have an increased risk of developing Parkinson’s.

An investigation published by The Guardian in 2022 found that manufacturers of paraquat identified links between the pesticide and Parkinson’s as far back as the 1960s. Specifically, animal trials in 1966 showed that high doses of paraquat in rats and mice resulted in “stiff gait or tremors” — the primary physical symptoms of Parkinson’s disease. Nearly 20 years later, a research study reported an extremely high correlation between levels of pesticide exposure and Parkinson’s. 

Despite this, says Dorsey, “use of paraquat in the U.S. has more than doubled in the past five years for which data is available, despite its known risks.”

TCE and Parkinson’s Risk

TCE is a cleaning chemical used in a variety of products, including household cleaners, and across a wide range of industries, from dry cleaning to manufacturing. Researchers have linked exposure to TCE with a 500% increased risk of Parkinson’s disease. A very similar chemical called perchloroethylene (PCE) is used in many of the same types of products and applications.  

Because it is so widely used across many different industries, it is difficult to estimate the total number of people in the U.S. who have been exposed to toxic levels of TCE. Dorsey notes that even if people do not work in an industry that uses TCE, the chemical is so widespread that many are exposed to contaminated groundwater or toxic TCE levels in the air. 

“TCE contaminates up to 30% of groundwater in the United States,” says Dorsey. “Once contaminated, it forms underground plumes that can migrate a mile or more, and then from these underground plumes, much like radon, TCE can evaporate from groundwater into people’s homes, schools, and workplaces.”

Prioritizing Parkinson’s Research and Prevention

Dorsey argues that in order to effectively address the growing rate of Parkinson’s, the scientific community needs to embrace a new approach to brain diseases like Parkinson’s — one that emphasizes research and prevention, not just treatment.

“For each dollar Medicare is spending on caring for people with Parkinson’s, the NIH is spending one cent on research related to it — that’s just not going to get the job done,” says Dorsey. “It’s really hard to make big therapeutic breakthroughs when you don’t know the cause of a disease.”

Research is key to better understanding how environmental toxins like pollution, pesticides, and chemicals like TCE contribute to the formation and progression of Parkinson’s. Additionally, insights gained from this research will shed light on related neurodegenerative diseases. 

“These environmental toxins that are associated with Parkinson’s disease aren’t just limited to Parkinson’s — they likely apply to other brain diseases, especially Alzheimer’s disease and ALS,” says Dorsey. “The greatest gift we neurologists can give to future generations is a world where Parkinson’s disease, Alzheimer’s disease, and ALS are increasingly rare, not increasingly common.”

You can view the full webinar discussion with Dr. Dorsey here.

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.

MINNEAPOLIS, MN Feb. 20, 2024 – The American Brain Foundation (ABF) is pleased to welcome a new executive director to its leadership team, Michelle Heritage. Michelle has contributed more than 30 years of non-profit and public sector experience in leadership roles across multiple industries.

With a strong track record of success and a commitment to bold outcomes, Ms. Heritage will lead the American Brain Foundation into a new era of education, innovation, and impact.

“The American Brain Foundation is the leading voice in brain research and my overarching goal is to ensure that the interconnectedness of brain diseases and disorders is widely known and understood,” says Heritage. “I am deeply honored to work alongside the talented team at the Foundation to reinforce the message that when we cure one brain disease, we will cure many.”

For Michelle, brain health is personal—and she recognizes that it’s personal for almost every household in America. With her direction, the American Brain Foundation will broaden its footprint in their efforts to advance brain disease research.

“Michelle’s extensive experience and leadership will propel the Foundation toward its vision of creating a life without brain disease,” said American Brain Foundation Board Chair David W. Dodick, MD, FAAN. “On behalf of the entire board, we are thrilled for Michelle to take the helm as the American Brain Foundation paves the way for groundbreaking and transformative research, ensuring brighter futures for all impacted by neurological disorders.”

Heritage has the deep-rooted expertise to bring this vision to fruition. As a celebrated leader, she has received numerous accolades over her tenure by successfully building and leading programmatic initiatives on local, state, and national levels. Her storied career demonstrates a consistent commitment to advancing organizations to their highest potential.

“It’s truly an honor to join the Foundation in its vital effort to bring about tangible change on how we approach brain health on a national scale,” says Heritage.

About The American Brain Foundation:
The American Brain Foundation promotes and invests in research across the whole spectrum of brain diseases and disorders knowing that when we find a cure for one brain disease, we will find cures for many. Our holistic approach focuses on building bridges between different brain diseases to break new ground in both research and application. To learn more, visit us at www.americanbrainfoundation.org

Biomarkers are crucial to diagnosing brain diseases and developing new treatments. Learn about types of biomarkers and how they drive research progress.

Biomarkers have played a big role in some of the most significant brain disease research breakthroughs of the last year — from researchers developing a new Parkinson’s biomarker test to using measurements of toxic protein buildups to test newly approved Alzheimer’s drugs. But what is a biomarker exactly, and why are biomarkers so useful to doctors and brain disease researchers? 

In addition to allowing doctors to better diagnose and treat diseases like Alzheimer’s and Parkinson’s, biomarkers drive research by helping scientists understand the causes and progression of diseases. They also aid in the development of new treatments. Read on to learn about different types of biomarkers and how biomarker research takes us one step closer to life without brain disease.

What Are Biomarkers?

A biomarker is any measurable substance or biological process that illustrates something happening in the body. Biomarkers may show the presence of a disease, the risk of developing a disease, or a particular response the body is having to medications or environmental factors. Think of them as biological clues that provide critical information about our health and illnesses.

Biomarkers may be substances found in the blood or spinal fluid (called fluid biomarkers), such as the presence of toxic protein clumps in people with Alzheimer’s disease or blood sugar levels for someone with diabetes. Additionally, biomarkers can be particular genes, testable measurements like blood pressure, or even test results themselves, like images from an MRI or CT scan.

Why Are Biomarkers Useful?

Discovering a biomarker for a disease that isn’t easy to diagnose is like finding a fingerprint for a specific condition. This is helpful in many ways, but primarily in the diagnosis and treatment of diseases.

Biomarkers Aid in Disease Diagnosis

Biomarkers often give doctors a more clear-cut way to identify and diagnose a disease as opposed to making a diagnosis based on symptoms alone.

This is especially important for neurodegenerative diseases like Alzheimer’s, Parkinson’s, LBD, and others. In many of these diseases, symptoms don’t appear until after the disease has already been present for many years. By the time doctors can make a diagnosis based on symptoms, significant and often irreversible damage has already been done to the brain. On the other hand, if doctors can use biomarkers to detect and diagnose a disease early, it is much easier to start early treatment and prevent the disease from progressing into more severe stages.

Biomarkers Help Direct and Monitor Treatments 

Additionally, some types of biomarkers allow doctors and researchers to monitor the effectiveness of treatments over time.

For example, last year the FDA approved several new Alzheimer’s medications based on research showing that they effectively reduced the amount of toxic amyloid proteins in the brain. These new drug developments were made possible by prior research that linked clumps of this specific type of protein to Alzheimer’s disease. Based on this earlier discovery, researchers knew they could test for a specific biomarker — amyloid proteins — to determine the presence of Alzheimer’s and that drugs targeting this protein may slow the progression of the disease.

Types of Biomarkers

Biomarkers can take many different forms and serve a range of different purposes. For example, fluid biomarkers like those discussed above are substances that can be detected in blood, spinal fluid, or other bodily fluids through testing. Genetic biomarkers are specific characteristics found in DNA (or RNA) that indicate a higher risk of developing certain diseases or disorders. Genetic biomarkers are relatively new, having been identified more and more within the past 20 years with the completion of the Human Genome Project.

Additionally, the FDA defines seven different types of biomarkers based on the specific ways they help doctors and researchers understand diseases:

  • Diagnostic biomarkers, as described above, indicate the presence of a disease in the body. 
  • Monitoring biomarkers can be repeatedly tested over time to track the progress of a disease. (Many other types of biomarkers listed here can serve as monitoring biomarkers when tracked consistently over time.)
  • Response biomarkers (sometimes called pharmacodynamic biomarkers) specifically show the body’s response to certain treatments. For example, the changes in protein levels used to approve the new Alzheimer’s drugs mentioned above would be considered response biomarkers, because the changes in protein levels occurred in response to drug treatment. 
  • Susceptibility/Risk biomarkers show whether a person is at a higher-than-average risk of developing a disease. For example, specific gene mutations linked to a disease like spinal muscular atrophy may be used as risk biomarkers.  
  • Predictive biomarkers help doctors and researchers determine whether a person is likely to respond to treatment. (This is different than response biomarkers, which track a person’s actual response to the treatment itself over time.) They are especially important for researchers developing new types of therapies for diseases. 
  • Prognostic biomarkers are used to predict the progress of a disease or the likelihood of a disease recurring or worsening in people who have already been diagnosed. 
  • Safety biomarkers help monitor whether a person is likely to develop complications from a specific treatment or exposure to a toxic substance.

Biomarkers Can Drive Progress in Other Research Areas

Finding a new biomarker for one disease may also shed light on other related diseases. For example, in partnership with the Alzheimer’s Association, The Michael J. Fox Foundation for Parkinson’s Research, and the American Academy of Neurology, the American Brain Foundation is currently funding a Cure One, Cure Many Award to find a biomarker for Lewy body dementia

Because LBD shares many symptoms with other types of dementia, identifying a blood-based biomarker for LBD would help doctors make a more accurate diagnosis and reduce cases of LBD being misdiagnosed as Alzheimer’s or another similar disease. Additionally, research that uncovers an LBD biomarker may also offer information scientists can use to better understand how diseases like Alzheimer’s and LBD are related.

This is one of the reasons we fund research across the full spectrum of brain diseases and disorders — because insights into the cause or treatment of a disease often have ripple effects across many other research areas. 

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

Assistive technology can help people with disabilities due to brain disease maintain or improve their quality of life. Learn how research is driving advancements in different types of assistive technology for neurologic disorders.

Brain diseases create a substantial burden for individuals and their families, and a single diagnosis often impacts many different aspects of daily life. In addition to the impact of physical symptoms, brain disease can affect an individual and their loved ones socially, emotionally, and financially. Many people with a disabling brain disease may benefit from assistive technology that enhances their quality of life by helping them maintain mobility, participate socially, and perform essential daily activities.

Improved assistive technology is crucial in addressing the range of challenges faced by people living with brain disease. By investing in research and developing more effective assistive technologies, we can make significant strides toward alleviating the challenges posed by brain diseases and improving the overall well-being of individuals and their support networks.

What Is Assistive Technology?

Assistive technology enables people with disabilities to perform certain tasks and activities that may be unmanageable without additional help. For people with brain diseases like Alzheimer’s or traumatic brain injury (TBI), assistive technology may improve quality of life by serving as a memory aid or helping keep track of important information and daily tasks. For someone with Parkinson’s or another movement disorder, assistive devices may be equipment that helps them interact with their home or perform tasks that have become difficult due to mobility-related symptoms.

There are many types of assistive devices available, ranging from simple items like pill organizers and calendar reminders to high-tech wearable devices like deep brain stimulation and computerized memory aids. By offering additional support and promoting independence, assistive technology enables people with disabilities due to brain disease to participate more fully in their home, work, and social lives.

Disabilities Caused by Brain Disease

According to the World Health Organization, neurological disorders are the leading cause of disability worldwide — yet people with disabilities still face many barriers to care. The need for more accessibility and awareness around disabilities associated with neurologic disorders is so great that last year’s World Brain Day was organized around the theme “Brain Health and Disability.”

There are hundreds of brain diseases that can cause disabling symptoms. These disabilities greatly affect a person’s quality of life and often create barriers that keep them from engaging in meaningful communication with loved ones, limit their ability to participate in public spaces, and prevent them from living independently. For example, challenges communicating — which often get worse over time in diseases like ALS or FTD — can result in feelings of isolation and frustration for both individuals and their families. Additionally, many public spaces are not accessible for people with mobility issues, which may lead to a heightened sense of exclusion and loneliness. 

Below are some examples of the kinds of disabilities caused by neurologic disorders. 

Mobility Issues: Movement disorders like Parkinson’s disease and tremor often lead to impaired motor function, restricting a person’s ability to move freely and independently. For example, Ruth has orthostatic tremor, a rare movement disorder characterized by rapid muscle tremors in the legs and torso. It causes unsteadiness, exhaustion, pain, and muscle stiffness, and symptoms tend to get worse over time, meaning many people like Ruth eventually need mobility aids and help from caretakers. 

Memory Problems: Alzheimer’s and other forms of dementia can result in memory loss and difficulty retaining and recalling information, which may impact daily activities.

Speech and Communication Challenges: Brain diseases like ALS affect the ability to verbally communicate thoughts and impact a person’s speech.

Emotional and Behavioral Changes: Brain diseases can result in emotional and behavioral symptoms, affecting one’s ability to engage in social activities and relationships. This happened to Courtney, who was diagnosed with TBI as a child and epilepsy as a teenager. She often avoided social activities like school dances because she was afraid of having seizures, and she has struggled with anxiety and depression related to her diagnoses since she was a teen.

Cognitive Decline: Progressive difficulty with thinking may impact decision-making abilities, problem-solving skills, and overall mental functioning, making routine tasks challenging.

Addressing these obstacles requires a comprehensive approach that takes into account issues of accessibility and disparities in neurologic care. However, advancements in assistive technology are one way to offer people living with disabilities due to brain disease a greater ability to communicate and participate in public life. 

Types of Assistive Devices

There are many different types of assistive devices, ranging from extremely simple to advanced technology. Assistive devices are often categorized by the type of accommodation or assistance they provide. Below are a few different types of assistive devices and some examples of each. 

Home Modifications 

Home modifications help people with mobility issues — often due to Parkinson’s, ALS, SMA, other movement disorders, and TBI — move around, complete daily tasks, and operate safely within their own homes. Home modifications may include things like tub and shower chairs, adaptive utensils, non-skid dishes, reach extenders, medication organizers, mechanical lifts, automatic page-turners, and more. 

Many of these devices may seem simple, but they offer important modifications that enable people to live more independently. This takes some burden off of their caretakers and may even make the difference between continuing to live in their home versus having to enter an assisted living facility.

Wearables and Prosthetics 

Wearables and prosthetics can serve many different purposes, but the main goal is to give people more independence, both at home and in public spaces, and to improve quality of life. Wearables can be noninvasive — as simple as wearing a smartwatch that tracks certain symptoms or vital signs — or may need to be surgically implanted in the body.

One notable example of recent advancements in prosthetic technology for brain disease is a speech device designed to help people with ALS communicate. ALS is a neurodegenerative disease that attacks nerve cells in the brain and spinal cord that control muscle movement. In later stages of the disease, the muscles responsible for speech are so weakened that people with ALS eventually lose the ability to talk. However, recent studies have shown success with new prosthetic devices that can be implanted into the brain to translate brain patterns into audible speech.

Deep brain stimulation (DBS) devices are another example of wearable assistive technology that offers benefits for people with brain disease. DBS involves implanting electrodes into specific areas of the brain. The electrodes are controlled by a device, similar to a pacemaker, that sits under the skin of the upper chest and creates electrical signals that affect certain brain cells. Currently, DBS is often used to treat or monitor diseases that do not respond to medication, such as Parkinson’s or drug-resistant epilepsy. 

Some recently developed wearables can detect tonic-clonic seizures, a specific type of seizure that can increase the risk of SUDEP (sudden unexpected death in epilepsy). These devices alert a person with epilepsy that they are about to have a seizure, enabling them to prepare and take precautions, potentially saving their life.

Memory Devices

Memory devices help people with Alzheimer’s, dementia, or difficulty with thinking and mental processes related to TBI to maintain their independence and quality of life. Memory devices can be extremely simple and low-tech, such as memory stations that contain a person’s essential items like a wallet, keys, phone, and medications. In some cases, assistive memory devices may be more high-tech, like automatic calendars, automatic pill dispensers, and smart devices like Alexa or Google Home that help set reminders and keep track of grocery lists and various other daily tasks.

Advancing Assistive Technology Through Research

Assistive technology is a crucial tool in helping individuals navigate the challenges and disabilities created by brain disease. By investing in research that advances assistive technology, we not only enhance the quality of life for individuals facing these challenges but also pave the way for a more inclusive and supportive society. 

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

How are Alzheimer’s and Parkinson’s disease connected, and how does Parkinson’s disease dementia differ from Alzheimer’s? Learn about key similarities and differences between these two neurodegenerative diseases. 

Alzheimer’s disease and Parkinson’s disease are the two most common neurodegenerative diseases, impacting nearly 8 million people combined in the U.S. The number of people living with each disease is expected to double by 2050.

With the growing prevalence of these and other neurodegenerative diseases, research to determine how they are connected is critical. We know that when we make discoveries regarding one disease, it leads to a ripple effect that yields insights into many others. Below we outline some important connections and similarities between Alzheimer’s and Parkinson’s disease and explore how research into one disease may lead to advancements in diagnosis and treatment for others.

What Is the Difference Between Parkinson’s and Alzheimer’s?

Alzheimer’s and Parkinson’s are both neurodegenerative diseases caused by disruption and damage to certain parts of the brain, with more and more critical brain cells dying as the disease progresses. However, each disease has distinct symptoms due to the specific brain regions affected and how brain signals are disrupted. For example, the most common symptoms of Alzheimer’s disease are memory loss and having trouble thinking, while Parkinson’s mostly causes difficulty with movement and fine motor skills.

What Is Alzheimer’s Disease?

Alzheimer’s disease affects memory and thinking and accounts for 60% – 80% of all dementia cases. Early signs of Alzheimer’s may resemble basic age-related memory issues, but as symptoms progress, people experience severe memory loss, confusion, and difficulty thinking and performing daily tasks. 

What Is Parkinson’s Disease?

Parkinson’s disease primarily affects movement, with symptoms like tremor, slowed movements or freezing (the sudden inability to move), and loss of balance and coordination progressively getting worse over time. Dementia symptoms similar to those of Alzheimer’s can occur eventually in Parkinson’s disease, but they are not the primary symptoms.

Can Parkinson’s Cause Dementia?

While dementia usually isn’t a primary symptom of Parkinson’s disease, it is common in the later stages of the disease. Studies have shown that up to 70% of people with Parkinson’s will eventually develop dementia at some point. 

Though similar, Parkinson’s disease dementia is not the same thing as Alzheimer’s disease.  Dementia refers to a range of symptoms — including memory loss, trouble thinking, confusion, and difficulty concentrating — but there are multiple diseases that may cause dementia. The form of dementia many people with Parkinson’s eventually develop is typically a form of Lewy body dementia (LBD).

Alzheimer’s is the most common cause of dementia, but LBD, FTD-ALS spectrum disorders, Parkinson’s, and other diseases can cause these symptoms as well. Because so many different diseases involve dementia at some point in their progression, research breakthroughs in any one of these disease areas will likely shed light on the causes and symptoms of the others.

Alzheimer’s vs. Parkinson’s Disease: What Causes Neurodegenerative Diseases?

Both Alzheimer’s and Parkinson’s are neurodegenerative diseases researchers have linked to toxic protein clumps in the brain. In these cases, faulty versions of otherwise healthy proteins found in the brain form clumps and tangles that damage brain cells and disrupt brain function. For example, in Parkinson’s disease, these toxic buildups damage the parts of the brain responsible for movement.

There are three types of proteins commonly linked to neurodegenerative diseases like Alzheimer’s and Parkinson’s:

  • Beta-amyloid
  • Alpha-synuclein
  • Tau

While beta-amyloid clumps and tau tangles are more common in Alzheimer’s disease, Parkinson’s is mainly characterized by alpha-synuclein buildup. However, toxic buildups of each of these types of proteins may be found at different levels across a range of neurodegenerative diseases.

Can You Treat Alzheimer’s and Parkinson’s Together?

Alzheimer’s and Parkinson’s are generally treated with different medications and therapies tailored to their specific symptoms. 

Historically, the only treatments for Alzheimer’s were medications and therapies to help manage symptoms. However, several recently approved Alzheimer’s drugs have proven effective in reducing the amount of toxic amyloid-beta proteins that cause the disease. Researchers hope that a similar approach may soon result in treatments that can target the harmful protein clumps found in Parkinson’s and other neurodegenerative diseases.

In Parkinson’s, the brain loses the ability to create the chemical dopamine, which is involved in movement. For this reason, common Parkinson’s treatments include drugs to regulate dopamine levels and deep brain stimulation to trigger parts of the brain responsible for motor skills. People with Parkinson’s may also undergo physical therapy to help manage symptoms. While there are currently no approved drugs that can slow or halt the progression of Parkinson’s, researchers have made progress in early diagnosis — including developing a biomarker test to detect alpha-synuclein last year.

The links between diseases like Parkinson’s, Alzheimer’s, and other neurodegenerative conditions show that a breakthrough in one disease may lead to advancements in many others. At the American Brain Foundation, we know that investing in research across the full spectrum of brain diseases and disorders will lead to new diagnosis methods, treatments, and ultimately cures for a range of devastating brain 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.

Researchers have developed a new “brain atlas” that maps over 3,000 different types of brain cells. Find out how this new high-res brain map will aid in diagnosing and treating brain diseases.

Recently, an international team of scientists took a major step forward in brain research by creating the largest and most detailed map of the human brain ever made. Using advanced imaging techniques, researchers working with the NIH-funded BRAIN Initiative – Cell Census Network (BICCN) mapped over 200 regions across the brain and identified more than 3,000 different types of brain cells. Together, these new high-resolution maps provide an unprecedented 3D view of the brain’s structure and will act as a monumentally significant resource for future studies of brain development and disease formation and progression. 

Read on below to learn how this new atlas of the brain will aid in developing more targeted treatments, diagnosis methods, and prevention strategies for diseases like Alzheimer’s, Parkinson’s, and other neurologic conditions.

How Did Researchers Create the New Brain Maps?

The new brain atlas is the result of pioneering efforts from an international group of researchers, each working to map distinct regions or aspects of the brain. Many researchers worked on mapping the cell structures of different parts of the brain (where different types of brain cells are located and how they communicate). Others contributed maps of the various genetic properties and functions of specific brain cells.

Some research teams also assembled detailed maps to use in comparing how the anatomy of the human brain differs from that of chimpanzees, gorillas, and other primates. These particular maps will be especially useful for scientists performing pre-clinical research using animal models, as they will help researchers translate important findings about treatment and diagnosis to human clinical trials.

The group of researchers published more than 20 individual papers detailing the results of this mammoth undertaking. Researchers will be able to continue adding information as future discoveries expand on our understanding of the brain.

How Does the Brain Atlas Help Researchers? 

The detailed brain maps created by the researchers have exciting potential applications for better understanding, diagnosing, and treating a range of brain diseases and disorders. Some of the key possible uses of the brain atlas include: 

Tracking Where Brain Diseases Start and How They Spread

The brain atlas acts as a comprehensive reference for how specific types of cells function and where in the brain they are found. This creates a strong foundation for researchers looking to better understand the role of particular brain cells or regions of the brain in different diseases.

These maps could also provide crucial insights into how certain areas of the brain are affected differently by multiple diseases. Researchers can use this knowledge to understand how certain diseases or symptoms may be connected and to better target specific neurons or parts of the brain for treatment.

Enabling Earlier and More Accurate Diagnosis

Another promising application is using the maps to identify biomarkers that can aid in diagnosis. For example, some of the brain maps revealed in unprecedented detail specific patterns of neurodegeneration in the cortex that have long been associated with Alzheimer’s. In the future, doctors may be able to compare advanced imaging of an individual’s brain to these maps to identify specific patterns that match those seen in the brains of people with Alzheimer’s. This could enable earlier and more accurate diagnosis, allowing doctors to treat the disease before severe symptoms begin.  

Monitoring Disease Progression and Treatment

The maps also open up possibilities for tracking the specific ways brain diseases progress over time. Additionally, by comparing images of brains in various stages of a disease against healthy brain maps, researchers can gain insights into how fast the disease is advancing and how well treatments are working.

The brain maps can also act as a baseline for testing new therapies that target specific brain cells or regions. For example, one of the scientists involved in the brain atlas project notes that the brain maps may help Parkinson’s researchers develop treatments that specifically target the area of the brain where the majority of dopamine-producing cells are located (called the midbrain). Because misregulation of dopamine is a major component of Parkinson’s disease, this could aid in the development of more effective therapies for Parkinson’s and related disorders. 

Future Research

The new brain maps are the culmination of years of work across many different research teams. While the brain atlas is a landmark achievement, the researchers involved emphasize that this is still early progress in a much longer scientific undertaking. The BICCN project was launched in 2017, with initial findings from the first completed studies published over two years ago. The BICCN’s latest findings are being published to open-access public databases, meaning doctors and researchers across the world can use this data freely. This is being done to encourage the global scientific community to build on this groundbreaking research and accelerate future progress.

More studies are needed to expand our understanding of the development, structure, and functioning of both healthy and diseased brains. For example, researchers may use the brain maps to launch deeper investigations into how brain cells or communication between different brain regions can differ among individuals based on age, genetics, and life experiences. 

Additionally, as scientists continue to refine and expand on these brain maps, our understanding of the brain will grow exponentially. While there is still much more research to be done, the brain atlas puts us one step closer to understanding a range of brain diseases and disorders and developing personalized treatments based on an individual’s unique brain structure.

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.

Latino individuals are more likely to have Alzheimer’s disease but less likely to receive the appropriate diagnosis and care. Learn how researchers are working to bridge these disparities in brain health.

Brain diseases affect people of all races and ethnicities, but in the U.S., studies show they disproportionately affect people of color as well as people in lower socioeconomic groups and underserved areas. For example, Black and Latino individuals are consistently underdiagnosed and have less access to early, effective care, resulting in poorer outcomes compared to their white counterparts. These differences in diagnosis and care are referred to as “neurodisparities” and are a major challenge to achieving equity in brain health. 

Delayed diagnosis of brain diseases and lack of access to proper care have devastating consequences for individuals and their families. Neurodisparities in diagnosis, research, and care increase inequality and heighten the impact of these diseases on already vulnerable communities.

Racial Disparities in Alzheimer’s Disease

Dr. Irving Vega studies Alzheimer’s disease with a focus on understanding its impact within the Latino community. “Access to health care is a big issue,” says the Michigan State University associate professor. “How you get access to preventing chronic diseases and how effective you are deal[ing] with those chronic diseases will impact your risk later in life.”

According to the Alzheimer’s Association, Latino populations in the U.S. are 1.5 times more likely to develop Alzheimer’s than their white counterparts. Additionally, data reported in 2023 showed that 13% of Hispanics aged 65 years and older have Alzheimer’s or another form of dementia.

With over 5 million diagnosed cases of Alzheimer’s in the U.S. alone — and projections that this number will triple by 2050 — the disease presents a significant socioeconomic burden in addition to challenges in treatment and care. It is crucial that research efforts focus on understanding these disparities and connecting researchers with underrepresented communities to ensure equitable access to resources, knowledge, and effective treatments. 

Discrimination in Alzheimer’s Care

A study conducted by the Alzheimer’s Association found that 55% of Hispanic American respondents perceived affordability of brain health care as a barrier, while 41% identified the lack of good health care insurance coverage as an obstacle. Additionally, studies showed that racial discrimination acts as a significant barrier to Alzheimer’s and dementia care.  

Researchers found that fear of bias or discrimination plays a significant role in maintaining neurodisparities. One study revealed that 18% of Hispanic Americans reported fear of being treated differently based on their race, color, or ethnicity, and that this acted as a barrier to seeking care — significantly higher than the 1% of white Americans who reported the same. The same study showed that 33% of Hispanic Americans reported having experienced discrimination when seeking health care. These prior encounters with bias and discrimination not only increase fear and distrust but also create additional challenges in accessing health care services.

Latino Communities Are Significantly Underrepresented in Research

In addition to the above barriers to seeking care, Hispanic Americans are also significantly underrepresented in Alzheimer’s clinical trials. This lack of diversity in clinical trials further reinforces health disparities because the data produced does not accurately reflect the entire population affected by brain disease. This can result in research that fails to account for a range of important social, cultural, and economic differences. For example, tests used to diagnose cognitive impairment may not be as effective for Spanish-speaking populations if they are developed based mainly on results from native English speakers, as there are nuances that can be lost in translation.

There are a range of reasons for Latino populations being underrepresented in current research, many of which are due to socioeconomic factors. For example, a study conducted by the Alzheimer’s Association found that African Americans, Latinos, and Native Americans are more concerned than white Americans about participation in research disrupting work and family responsibilities and availability of transportation and childcare.

In the same report, 36% of Hispanic Americans surveyed said they believe that medical research is biased against people of color, which limits their willingness to participate in studies. Another study that looked at the participation of diverse populations in Alzheimer’s research found that commonly used exclusion criteria in Alzheimer’s clinical trials disproportionately affect African Americans and Hispanics/Latinos, limiting their enrollment in such research.

This lack of trust and participation highlights the urgent need to address diversity and inclusion in research by engaging with underrepresented communities and increasing transparency.

Addressing Neurodisparities in Brain Disease Research and Care

To bridge this gap between Alzheimer’s researchers and Latino communities, Dr. Vega is forming partnerships with community organizations in Michigan, aiming to bring Latino individuals and stakeholders into the Alzheimer’s research fold. Dr. Vega also focuses on raising awareness and dispelling myths about the disease, such as the belief that Alzheimer’s is solely a result of old age. He emphasizes that this belief leads to delayed treatment for people with the disease, preventing them from getting critical early care.

Neurodisparities also extend beyond Alzheimer’s disease. The American Brain Foundation recognizes the need to prioritize equity in brain health and research across the full spectrum of brain diseases and disorders. We award an annual Next Generation Research Grant in neurodisparities to a research project designed to improve our understanding and treatment of health disparities. Our 2023 grant was awarded to Dominique Popescu, PhD, who is studying how social and psychological factors contribute to disparities in stroke severity and recovery.

Promoting diversity and inclusion in brain disease research and health care is essential to increasing participation in studies and expanding our understanding of neurodisparities. By working collaboratively, raising awareness, advocating for equitable policies, and investing in resources, we can strive for a future where everyone, regardless of their background, receives equal access to effective prevention, diagnosis, treatment, and support for brain 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.

The need for research is urgent, but scientific progress is often slow. Learn more about the timeline of brain research and how incremental progress leads to breakthroughs.

At the American Brain Foundation, we know that research is the only way we will find new treatments, prevention strategies, and cures for the full spectrum of brain diseases and disorders. The millions of people who are living with brain disease or have a loved one with brain disease need these treatments now—however, the pace of scientific progress is slow and gradual. 

It’s a painful truth that the breakthroughs that make a difference in people’s lives often take a long time. Maintaining hope for the future means empathizing with the urgent need for progress right now while recognizing that breakthroughs do not happen overnight. Read on to learn what the actual timeline of scientific progress often looks like and see examples of research breakthroughs that have happened as a result. 

The Jigsaw Puzzle of Research: How Incremental Progress Leads to Cures

Scientific progress is not linear. In a perfect world, a researcher would set out to explore one specific question, and throughout the course of their project, they would find the answer. In reality, the research process is much more complex. Often researchers will set out to find the answer to one question and in the course of their study will find multiple other questions that need answers. 

It can be helpful to think about research and scientific progress like doing a large puzzle with hundreds of pieces. At first, all the pieces seem jumbled and the final picture—the new insight or treatment being sought—is not clear. As you work on the puzzle, certain parts of the picture slowly start to come together, and you see how certain pieces fit together while others don’t. Each piece of the puzzle builds on the pieces before it, eventually forming a full, clear picture at the end. 

Research works similarly: One research study may yield what seems like a very small insight or bit of very specific information, but this is what enables the next study to start just a little bit closer to the end goal (treatments and cures). With time, each study gives us a deeper understanding of the brain and takes us one step closer to breakthroughs that will eventually lead to cures and transform lives.

Types of Scientific Progress

Progress can happen in many different ways, and often research contributes to slow, gradual progress in one disease area while also enabling discoveries in another field. For example, a study that offers an explanation for a specific symptom of one disease may also provide data that helps scientists understand the causes behind another. 

A report published by the National Institutes of Health outlines several distinct but often overlapping ways in which research results in scientific progress:

Discovery

Possibly the most obvious type of progress happens when researchers uncover new information that changes the way we understand a disease, biological process, or other topic of research. Occasionally, discoveries can be sudden, major breakthroughs—but more often they are small, specific insights that enable us to approach a scientific question in a new way and armed with new knowledge.

For example, in recent decades researchers have begun to better understand the role that brain inflammation plays in the formation of Alzheimer’s disease. The discovery that individuals with Alzheimer’s often have significant signs of brain inflammation—including in brain cells called microglia and astrocytes, which play a key role in the brain’s inflammation response—has opened up new avenues for research. 

Ongoing research continues to explore the role of neuroinflammation in Alzheimer’s, and researchers are now investigating treatment strategies with the potential to reduce inflammation and slow disease progression.

Analysis

Research can also result in the development of tools, investigation methods, and new sets of data and other resources that enable future studies to uncover insights that would otherwise be impossible. For example, the mapping of the entire human genome in the 1990s and early 2000s created an invaluable resource for researchers and enabled scientists to identify specific genetic mutations that cause or increase risk for particular brain diseases.

More recently, an international team of scientists compiled a “brain atlas” containing high-resolution maps of over 3,000 different brain cells across all major regions of the brain. These brain maps show in unprecedented detail how regions of the brain are connected and where different cell types are located. While this project itself did not result in any new treatments, it offers future researchers a valuable resource for exploring how specific brain diseases start and progress through the brain, which will aid in diagnosis and treatment for a range of diseases. 

Explanation

Often studies will contribute a small amount of new information that helps researchers in the field better understand or explain a particular disease, symptoms, treatment, or other trend. Rarely does one study fully explain the causes of a particular disease. Rather, many studies that each contribute their own small piece of the puzzle eventually build toward a broader understanding of disease formation and treatment.    

For example, it took many different studies for researchers to finally identify that the primary causes of Alzheimer’s and Parkinson’s disease were clumps of abnormal proteins in the brain. However, this explanation opened up research that eventually linked different types of protein clumps to other neurodegenerative diseases like Lewy body dementia. 

Integration and Development 

Another common type of scientific progress is when research enables scientists to make links between multiple disease areas or even different fields of study. This type of progress is often linked to breakthroughs in therapies for specific diseases and the development of new approaches to treatment that can be applied across multiple disease areas. 

For example, the above discovery that misfolded proteins were responsible for Alzheimer’s disease led to the development of a number of new drugs that target amyloid proteins in the brain, including lecanemab, which was approved early in 2023. Similarly, Dr. Jerry Mendell’s development of a method of gene therapy for Type 1 SMA led to the same approach being applied to develop similar gene therapies for other neuromuscular diseases.

Brain Disease Researchers Need Ongoing Support

Research may be a gradual process, but it is the key to reaching our vision of life without brain disease. Continued funding is necessary to maintain the forward momentum of brain disease research and ensure the slow buildup of knowledge needed to make breakthroughs. 

We have seen evidence of sustained research resulting in progress in our own Next Generation Research Grant program. Srikant Rangaraju, MBBS, MS, received his first research grant funded by the Foundation in 2014 to study how specific cells in the brain’s immune system—called microglia—contribute to the formation and progression of brain diseases. Dr. Rangaraju was able to use findings from this early research to provide justification for further studies, and he was awarded additional grants from the National Institutes of Health in 2021 and 2022 to continue his work. Dr. Rangaraju is now leading a research group at Yale University and continues to build on findings from his past research.  

Researchers like Dr. Rangaraju would not be able to move forward with their work and continue to make vital progress in brain disease research without continued funding. With your help, we can provide funding for the incremental advancements in today’s brain research that will eventually lead to the treatments and cures of tomorrow. 

Interested in learning more? Read about six critical advancements in the history of brain disease research.

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.

Genevieve experienced two severe traumatic brain injuries years apart. She shares how she persevered even when it meant relearning how to walk and speak.

 

An estimated 1.7 million people experience a traumatic brain injury (TBI) every year. From athletes to survivors of domestic violence, people who experience repeated TBIs often develop serious complications that disrupt their memory, speech, and thinking. For Genevieve Bahrenburg, two TBIs many years apart left her with aphasia and severe skull damage, requiring a total of 13 brain and skull surgeries over the years. Her most recent TBI set her on a recovery journey that required her to relearn many basic skills.  

Read Genevieve’s full story below, and learn how research into TBI and other debilitating brain diseases and disorders offers hope of recovery for many others like her in the future.

Experiencing a TBI at Eight Years Old

When Genevieve was eight years old, a classmate ran into her during a game of tag, and she fell and hit her head on a large metal sprinkler. She was whisked away to Mt. Sinai, where doctors suspected a concussion and sent her home with her mother.

Over the next few days, Genevieve was sleepier than usual. Her mother thought her behavior was unusual and took her back to the hospital for answers. Even though the medical team thought Genevieve was fine, her mother urged them to conduct a CAT scan. The scan revealed that Genevieve had a very large epidural hematoma—blood pooling between the skull and brain—and doctors said that without an immediate operation, she had very few hours to live.

Genevieve’s mother’s insistence and prompt medical intervention saved her life. Today, Genevieve describes her surgery scar as a “permanent reminder” to live life to the fullest.

Multiple TBIs: “Like Being Struck by Lightning Twice”

Many years later, in 2013, Genevieve was returning to her apartment in Greenwich Village with some friends. The building elevator wasn’t working so they were heading to the basement to find a way up when she was hit on the head and pushed down a flight of stairs.

“My friend heard a loud thud and turned back around to find me lying at the bottom of the stairwell, unresponsive and without a pulse,” says Genevieve. “My skin had turned blue.”

Genevieve had suffered another severe TBI, one that left her in a coma for 22 days. She remembers lying in the hospital bed, unable to speak or control her body. “When I woke up, I was petrified,” she says. “I wasn’t able to understand the doctors completely due to how damaged my brain was. I had to bring it back from ground zero.”

Before Genevieve woke up, neurosurgeons had removed two large hematomas on the right side of her brain. During this time, she was intubated and required five brain surgeries, and doctors had to remove the left part of her skull to ease the pressure on her swelling brain. 

Genevieve describes the two injuries as lightning striking twice. “In fact, it was my childhood TBI scar that provided an access point for my neurosurgeons,” she says.

Starting Over: Learning How to Live Again

After her injury, Genevieve had to relearn how to walk, speak, and breathe on her own. At first it was difficult to even form a full sentence, but three months of speech therapy at an acute rehabilitation facility and hours of practicing by herself gradually restored her basic language skills. Today Genevieve still struggles with aphasia and is often unable to recall familiar words. She is currently medicated for seizures and has been able to keep post-TBI depression at bay with exercise and positive determination. 

“The first word I spoke was ‘mom,’” Genevieve recalls. “That shows you how dear she is to me.

I don’t think I would have gotten through it without her. No matter how severe the surgeries were, she was always ready to go, making sure I was going to come out OK.”

Genevieve was also supported and inspired by her friends, including artist Chuck Close and illusionist David Blaine. Following the accident, Blaine gave Genevieve a Smythson notebook that she would bring to museums and libraries to write down the names of artists and authors that she loved. For Genevieve, these visits to The Metropolitan Museum of Art and The New York Public Library were essential to restoring her language recall and sense of self. Little by little, the art lover, author of Claiborne Swanson Frank’s American Beauty and Young Hollywood, and Vogue and Elle editor taught herself how to read again by challenging herself to remember the names and works of her favorite artists.

To regain her physical strength, Genevieve underwent months of physical therapy to relearn how to walk and work on her balance. She would also walk around the hospital, leaning on her nurses just like she had when she was recovering from her childhood TBI.  

Innovative PEEK Skull Prosthetics

After her recovery, surgeons tried to replace the missing part of Genevieve’s skull with a titanium insert. This is a common procedure for people with severe skull damage, but in Genevieve’s case, her body rejected the material shortly after surgery. Her doctors eventually had to reconstruct her skull using an innovative custom plastic implant called PEEK. 

 PEEK (polyether ether ketone) is a high-performance material used in many prosthetics. Its lightweight nature, durability, and ability to be customized make it an ideal material for constructing prosthetic devices that are both comfortable and functional. PEEK implants and prosthetics have significantly advanced treatment for a range of post-traumatic injuries, including in high-risk procedures like skull implants and reconstruction.

Even with innovations like PEEK and other wearable technologies, treatments for brain injuries are extremely limited and often fail to restore a person’s full physical or cognitive function. Doctors have had to replace Genevieve’s PEEK implant twice, requiring difficult and painful surgeries each time.

Importance of Education and Research

Genevieve’s story is remarkable but not uncommon. Brain diseases, disorders, and injuries like TBI affect more than a billion people worldwide, each of whom has a story to tell. It’s only through research that we will develop better treatments and therapies for someone like Genevieve and help rewrite those stories in the future.  

Genevieve hopes that future research will be able to focus on identifying trends in post-TBI aphasia that may aid in recovery. For example, identifying language patterns or specific words that are difficult to relearn—Genevieve struggled with words that began with the letter “c”—may help doctors develop more targeted therapies for people with aphasia. Genevieve’s determination played a big role in her recovery, and she used art and exercise to boost the brain’s natural healing process as it recharted important connections to relearn the language skills she had lost (an incredible capability of the brain called neuroplasticity). She is also passionate about improving prosthetics for people who have experienced severe TBI and skull damage.

Beyond highlighting the importance of research, Genevieve shares her story with others to explain the impact of brain disease and shine a light on the recovery process. “It’s not like breaking a leg, where you can look at the scans and know what’s injured,” she says “That is not the case with a brain injury, because there are so many different parts to the brain—it’s extraordinarily sensitive.”

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 say the new Mito DNADX test can detect evidence of Parkinson’s in the blood. So how does it work, and what does this mean for the future of Parkinson’s diagnosis and treatment?

 

A team of researchers funded by the National Institutes of Health and led by Dr. Laurie Sanders from Duke University has developed a blood test to detect possible evidence of Parkinson’s disease. In addition to aiding in early detection and diagnosis of Parkinson’s, the blood test may help researchers monitor the effects of new drugs and other treatments. 

Below we cover how this new test works, why it’s different from recent research into other Parkinson’s biomarkers, and what this means for the future of Parkinson’s research, diagnosis, and treatment.

How Does the New Mito DNADX Test Detect Parkinson’s?

The new blood test, called Mito DNADX, works by detecting damage to a particular part of the brain’s nerve cells called the mitochondria. Mitochondria are responsible for creating energy for the rest of the cell. In a study conducted by the researchers, blood samples from people with Parkinson’s disease showed higher levels of damage to mitochondria DNA, called mtDNA, than in people without the disease. 

Researchers found that the Mito DNADX test was effective in detecting Parkinson’s both in people with genetic forms of the disease and in people without any known genetic causes. It also worked regardless of whether someone was currently taking Parkinson’s medication. Additionally, the researchers were able to identify a specific level of mtDNA damage that separated the study participants with Parkinson’s from members of the healthy control group.

What Does the New Blood Test Mean for Parkinson’s Diagnosis?

Because mtDNA damage is also found in other diseases, the Mito DNADX test is not yet a single, definitive test for Parkinson’s disease. However, it does represent a major step forward in early detection and may soon give doctors another tool for arriving at an accurate Parkinson’s diagnosis.

Until recently, doctors could only diagnose Parkinson’s disease by observing a specific range of symptoms during a clinical visit, including the movement issues characteristic of the disease. However, in recent years there have been a number of leaps forward in early detection of Parkinson’s, including the development earlier this year of a test to identify the “Parkinson’s protein” in the blood. The Mito DNADX test now offers another way of detecting Parkinson’s before symptoms begin to show. This is helpful because it gives doctors ways to measure and detect two different blood-based biomarkers of Parkinson’s: presence of alpha-synuclein (the “Parkinson’s protein”) and now mtDNA damage.

Why Is Early Parkinson’s Diagnosis and Treatment So Important?

Much like Alzheimer’s disease, by the time most Parkinson’s symptoms begin to show, the disease is already in advanced stages and has done significant damage to the brain. Being able to start treatments for Parkinson’s before symptoms appear would give doctors more time to slow the disease’s impact on the brain and potentially minimize damage to vital brain tissues and nerve cells.

Additionally, earlier detection methods will help drive drug development and research into other types of treatment. Treatments for Parkinson’s are currently limited to drugs that boost dopamine levels—this helps minimize certain movement-based symptoms, but there are no available treatments to slow or halt progression of the disease. 

This is because researchers still can’t identify and target the root causes of Parkinson’s. For example, if researchers could confirm that damage to mitochondria in nerve cells was responsible for some Parkinson’s symptoms, they could start developing and testing drugs specifically to improve the health and functioning of mitochondria in the brain. 

Additionally, many researchers think Parkinson’s may be caused by a spectrum of similar diseases with overlapping symptoms. If this is the case, then being able to successfully diagnose and treat Parkinson’s in the future means learning how to identify and treat some of the specific, unique causes of these related diseases.

The Search for Blood-Based Biomarkers for Alzheimer’s and Other Neurodegenerative Diseases

Researchers are currently working to identify and develop tests for biomarkers for a range of neurodegenerative brain diseases similar to Parkinson’s, including Alzheimer’s disease and Lewy body dementia (LBD). 

Last year, one of our Next Generation Research Grant recipients, Suzanne Schindler, MD, PhD, was part of a research team that developed a blood test to detect misfolded beta-amyloid proteins in the brain, a key indicator of Alzheimer’s disease. Much like the Mito DNADX test, this blood test is not designed to be used as a standalone test for Alzheimer’s, but rather is one of many factors doctors may use to diagnose the disease.

Additionally, our Cure One, Cure Many Award for the early diagnosis of LBD is funding researchers from Mayo Clinic who are working to identify a blood-based biomarker for LBD. Because all brain diseases are interconnected and neurodegenerative diseases often share similar causes, a research breakthrough in one disease area will have a ripple effect on the diagnosis and treatment of many other conditions.

Want to learn about more of the latest breakthroughs in brain disease research? Read about recent advancements in Alzheimer’s research here.

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.

We’re celebrating this year’s major steps forward in brain disease research, education, and awareness—all thanks to our donors. 

The past year has been an exciting one for the American Brain Foundation. With the help of our donors and partners, we have funded critical brain disease research, shared free resources and updates on the latest research in the field, and promoted awareness of the impact of brain diseases and disorders.

As 2023 draws to a close, we are taking time to reflect on some of our accomplishments and the research advancements we were able to pursue this year with the invaluable support of our donors.

Our 2025 Cure One, Cure Many Award in Neuroinflammation 

This year, we were thrilled to announce our 2025 Cure One, Cure Many award focused on investigating the role of neuroinflammation in brain diseases and disorders. Our Cure One, Cure Many program supports breakthrough research efforts and provides large-scale funding to investigators pursuing the most innovative, cross-cutting research into prevention and treatment strategies for brain diseases and disorders. The program specifically targets research topics that cut across multiple disease areas. 

That is why we chose neuroinflammation as the research focus of our latest Cure One, Cure Many award. Neuroinflammation plays a role in nearly all known brain diseases and impacts people across all stages of life. Research into neuroinflammation will give us insights into diseases as different as Alzheimer’s disease, MS, Parkinson’s, ALS, stroke, brain tumor, epilepsy, traumatic brain injury, schizophrenia, autism, and COVID-19-associated brain disease, among others.

The neuroinflammation initiative has also drawn unprecedented support from a wide range of industries. The scope of this ambitious initiative has been made possible through cross-industry collaboration between scientists, venture and private philanthropists, pharmaceutical organizations, and patient advocacy and nonprofit organizations like the National MS Society, the Encephalitis Society, the NFL Players Association, Gates Ventures, and the WoodNext Foundation. This large-scale, coordinated effort to support research from a wide diversity of partners and donors demonstrates both the range of concern about the impact of neuroinflammation on brain health and its significance as an emerging public health issue.

We will begin soliciting research proposals for the neuroinflammation initiative in spring 2024, and research will begin in 2025.

New “What Is Cure One, Cure Many?” Page

All of our research efforts are driven by our philosophy, “Cure One, Cure Many.” We support research across the full spectrum of brain diseases and disorders because we know research into one brain disease will yield insights that can be applied across many others.

However, it is difficult to convey the full impact of this research approach in just a few sentences. That’s why we created a new page on our website dedicated to explaining what Cure One, Cure Many really means, providing examples of how research into one brain disease area has contributed to discoveries and advancements in others. Check out the new interactive page here.

Commitment to Cures 2023

We held our annual Commitment to Cures gala in Boston. The gala was emceed by Jim Cramer, host of CNBC’s Mad Money, and brought together a wide range of researchers and advocates, showcasing our collective commitment to finding treatments and cures for brain diseases. 

Highlights from this year’s Commitment to Cures gala included:

  • Raising $565,000 for brain disease research
  • Engaging a record-breaking 36 sponsors and over 500 in-person attendees
  • Honoring awardees and special guests, including Josep Dalmau, MD, PhD, FAAN, and Vanda Lennon, MD, PhD (Scientific Breakthrough Award), Arianna Huffington (Public Leadership in Neurology Award), and Peter Frampton (Ambassador Award)

You can find more updates from this year’s Commitment to Cures gala here.

13 Next Generation Research Grants (NGRG) Awarded

In 2023 alone, we funded 13 new early-career researchers through our Next Generation Research Grants program. Including recipients receiving continued funding from 2021 and 2022, we supported 30 researchers through this initiative this year. These brilliant minds are the future of brain disease research, and your contributions ensure they continue to have the resources they need to make groundbreaking discoveries. To learn more about how our NGRG program launches the careers of tomorrow’s most promising researchers, read interviews with some of our past grant recipients, Dr. Svjetlana Miocinovic and Dr. Carolina Barnett-Tapia

Support That Will Have a Lasting Impact 

Every donation, no matter the amount, supports vital research that gets us closer to our vision of life without brain disease. However, this year, we were incredibly grateful to receive a gift of $4.7 million from a private family foundation, the largest single gift in our history.

This gift will make an impact for years to come and will move brain disease research forward in a number of key areas. In addition to providing critical funding for our 2025 Cure One, Cure Many award in neuroinflammation, this donation will also support an ongoing research project to identify a biomarker for Lewy body dementia. While we know not everyone can make gifts on this extremely generous scale, this act serves as a poignant reminder of the lasting legacy we can create through donor support.

Donating directly to the American Brain Foundation is just one way to make a lasting impact. This year, we also updated our Planned Giving hub, which invites supporters to consider including ABF in their estate plans, whether through a bequest, a beneficiary designation, or an IRA rollover. This is an opportunity to ensure the fight against brain disease continues long into the future.

Education and Empowerment

Knowledge is a powerful tool in the fight against brain disease, because when people are informed they are better equipped to advocate for research and support caregivers. We continue to host free educational webinars every month featuring leading neurologists and brain disease experts. These webinars provide a platform for viewers to interact directly with the best minds in the field and have questions answered on a range of important topics. 

You can find recordings of all our past webinars on our YouTube channel.

Thank You to Our Supporters

As we reflect on our 2023 achievements, we are grateful to all the supporters who have helped us take these important steps toward our vision of life without brain disease. None of these accomplishments and ongoing research projects would be possible without funding from our donors. 

The fact that we have been able to make such great strides this year highlights the dedication of our supporters, but also underscores the urgent need for sustained funding to continue this important work. We look forward to continuing these efforts next year with your help.

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

The American Brain Foundation is able to accomplish so much because of the support of our donors. This Giving Tuesday, learn about everything the Foundation has been able to achieve recently and why continued funding is so important.

 

The American Brain Foundation has been able to fund so many important research projects as we continue working toward our vision of life without brain disease. Yet, as we reflect on our achievements, we know that there is still so much work to be done and research that needs to be funded—unfortunately, we are only able to fund 25% of research proposals that we receive. Only by continuing to fund research will we find treatments and cures for the 600+ brain diseases and disorders that impact millions of people every day.

In honor of the vital role our donors play in our efforts, we’re outlining some of the key ways your continued support provides a critical foundation for the future of brain disease research. Plus, learn how being personally impacted by brain disease inspired a private family foundation to make the largest gift in the American Brain Foundation’s history.

1. Many Small Contributions Help Form a Bigger Picture

Brain diseases are some of the most complex and devastating health challenges people face, which is why research sometimes seems to move so slowly. Finding cures, effective treatments, and prevention strategies for these conditions is like assembling a vast jigsaw puzzle. Each research project, no matter how small, contributes a piece to this puzzle. With time and resources, these pieces begin to form a clearer picture, ultimately leading to a deeper understanding of the brain and getting us closer to breakthroughs that can transform lives.

For example, for years researchers from many different fields focusing on a range of brain diseases investigated the potential of gene therapy to treat certain brain diseases. In 2019, nearly 30 years after the first-ever use of gene therapy in humans, Dr. Jerry Mendell successfully used gene therapy to develop a cure for type 1 spinal muscular atrophy (SMA). Dr. Mendell’s model not only built on the many smaller steps taken by previous researchers in the field, it also offered a model of gene therapy that researchers are now investigating to treat other forms of neuromuscular disease, including muscular dystrophy and ALS.

2. Like All Parts of the Brain, All Brain Diseases Are Connected

Every advancement, no matter how small, has the potential to create a ripple effect of discoveries that could make an impact across multiple diseases or disease areas. This is because all parts of the brain are connected, and a discovery in one area may lead researchers to uncover links between multiple brain diseases

Our 2025 Cure One Cure Many award, a multi-year cross-disciplinary research project focused on neuroinflammation, will allow researchers to explore the role of inflammation in brain diseases (there are over 600 known brain diseases, and neuroinflammation plays a role in nearly all of them). This initiative, which we know will lead to immense strides in brain disease research, wouldn’t be possible without the generous contributions of our supporters.

3. Brain Disease Research Is a Marathon, Not a Sprint

Research can take years and go through multiple phases before there are results that actually make it to patients. Researchers rely on continued support from donors to keep research moving forward, so we can make the breakthroughs that will impact the lives of the millions of people living with brain disease worldwide.

It’s not just new research proposals that need funding either. Many projects need multiple years of funding to complete their original goals or continue testing and refining new discoveries. Researchers often build on prior studies in the field to inform the goals and targets of future research. Funding not only enables researchers to make these connections, it can also provide the foundation they need to launch their early research careers. For example, Srikant Rangaraju, MBBS, MS, was awarded a research grant through our Next Generation Research Grant program in 2014, and went on to receive two National Institute of Health grants that helped further his research.

Building a Legacy of Support

This year we are incredibly grateful to have received a gift of $4.7 million from a private family foundation, the largest single gift in our history. One of the main reasons the donors decided to make this gift was because of a personal connection to brain disease, witnessing firsthand the toll that dementia takes on families and caregivers. 

This gift will move brain disease research forward in a number of key areas, from funding a major research initiative focusing on neuroinflammation to the search for a biomarker for Lewy body dementia. The donors also included funds for operating expenses, knowing that this important work cannot continue without support in this area. While we know that not everyone can make gifts on this extremely generous scale, this act serves as a poignant reminder of the lasting legacy we can create through donor support.

We recently invited supporters to consider making a lasting impact by including ABF in their estate plans. This is an opportunity to ensure that the fight against brain disease continues long into the future.

How You Can Help 

The American Brain Foundation has made significant strides in research progress thanks to the unwavering support of our donors and partners. However, the battle against brain disease continues, and many of the studies that will give us the treatments and cures of tomorrow still need funding today. 

This Giving Tuesday, we hope you will consider supporting brain disease research in the way that works best for you. There are many ways to give, including:

  • Join the Brain Squad – Recurring gifts help us make continued progress in the field by enabling us to fund critical ongoing research projects.
  • Start a Personal Fundraiser – Every little bit helps support brain disease research. Enlist your friends, family, and personal network to raise funds for Giving Tuesday or for your next birthday or milestone. (You can also create a fundraiser on Facebook.)
  • Consider a Legacy Gift – There are a variety of ways to include the American Brain Foundation in your estate planning and ensure the future of innovative research projects that will unlock discoveries across many different disease areas.

We need your help to continue investing in research that will lead to breakthroughs so that one day, we can all experience life without brain disease. 

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.

Is it possible for an AI model to develop self-awareness similar to human consciousness? A team of researchers developed a list of testable criteria to find out.

 

Since well before ChatGPT became part of the mainstream, researchers, fiction writers, and filmmakers alike have asked the question of whether artificial intelligence could ever become “conscious”—and how we would know if it did. Recently, a group of 19 computer scientists, neuroscientists, and philosophers set out to explore this question by developing a checklist for determining if an AI model is conscious. While this is not yet a full AI consciousness test, it does outline several different ways of approaching the question, “how do we know if AI is self-aware?” 

To build the checklist, the research team identified 14 key criteria based on different theories of consciousness. They then developed specific ways to test AI models against this checklist. The researchers emphasized that the checklist is designed to prompt more questions and offer a starting point for conversations about what consciousness might mean when talking about AI models.

What Does it Mean for AI to “Become Conscious?”

To be able to test an AI model for consciousness, we first need a clear definition of “consciousness.” The research team started by generating specific characteristics from a variety of current philosophies of consciousness, including:

  • Recurrent Processing Theory – This theory suggests that consciousness comes from our brains putting experiences through “feedback loops,” using prior knowledge and connections to make sense of our current experience. 
  • Global Workspace Theory – This theory helps explain how our brains coordinate and process the many streams of information running through our head at any given time. In this theory, consciousness is defined as being like a mental stage manager or spotlight that decides what gets our attention and what doesn’t.
  • Higher Order Theories – This is a group of theories that argue consciousness is the result of being aware of our thoughts and sensory experiences as they happen. Consciousness here is defined as being able to “think about thinking.”
  • Attention Schema Theory – This theory explains consciousness as a result of the brain’s ability to direct our attention to specific objects, thoughts, memories, and other stimuli while filtering out others. The ability to be aware of how and where our attention is being directed is a key element of this theory. 

Additionally, the researchers included criteria based around predictive processing, the brain’s ability to accurately predict and account for the world around you based on past experience. This is an especially important component of AI models designed to generate creative content or solve complex problems. 

The research team also included criteria to evaluate AI based on agency—the ability to make conscious decisions to act—and embodiment, either in physical space or relative to other virtual systems. 

Evaluating Current AI Models for 14 Characteristics of Consciousness 

Based on the above theories, the research team came up with a list of 14 characteristics that indicate consciousness. They argue that the more of these characteristics an AI model shows, the higher the possibility that it is conscious. When they tested a number of different current AI models against their checklist, the researchers found that none came anywhere close to meeting all 14 criteria. Only a few managed to check more than a handful of boxes. 

One of the researchers, Eric Elmoznino, gave one possible explanation: Different AI models fulfilled certain criteria and not others based on what they were originally designed to do. For example, many of the AI programs designed to generate images based on a prompt fulfilled some of the checklist criteria in the “recurrent processing” category. This makes sense, because these models need to be able to simulate objects and art styles based on many pre-existing examples.

It’s also important to note that different AI models are built using different algorithms and formulas to simulate both learning (how they gather and synthesize information) and communication (how they relate that information back to human users based on prompts). This means that different versions of AI—whether chatbots like ChatGPT or applications like AI virtual assistants—may rank differently for different criteria in the checklist. 

Does Testing AI for Consciousness Help Us Learn More About the Brain?

The researchers’ AI consciousness checklist is mostly just a thought experiment for now. However, AI models already have a role in brain disease research and have been used to help develop new technology that can aid in the treatment of many different diseases. 

Below are a few ways AI technology and machine learning are already helping researchers better understand, diagnose, and treat brain diseases and disorders. 

Brain Imaging and Mapping

AI models can review huge amounts of data much faster than human researchers. When combined with imaging technology like EEG, MRI, or CT scans, AI and machine learning can give scientists a better understanding of how different parts of the brain work together and how complex tasks are coordinated across the whole brain. 

Neuromodulation Devices

AI may play a growing role in neuromodulation devices and wearable technology. An AI model that can monitor subtle changes in brain chemistry or activity can help calibrate assistive devices much quicker and more accurately and can respond to factors human users may not even notice. For example, AI models may be able to detect an oncoming seizure in a person with epilepsy based on electrical activity in the brain.

Diagnosis

AI learning models can help doctors identify complex patterns in test results that can aid in diagnosis. Researchers have already successfully used AI to help spot the presence of disease in blood and tissue samples, recognize early signs of dementia, and diagnose Alzheimer’s with a single MRI scan

The group of researchers who created the AI consciousness checklist released a pre-publication version of the paper with their full research and findings, which you can read here.

Want to learn more about how the latest technology is helping researchers diagnose and treat brain disease? Register for our free expert-led webinars and view previous webinars to hear directly from leading neurologists on the latest advancements in brain disease research.

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.

Hear about Dr. Rangaraju’s American Brain Foundation-funded research and learn why better understanding the brain’s immune system can lead to treatments for brain diseases like Alzheimer’s. 

 

At the American Brain Foundation, our philosophy of Cure One, Cure Many drives our efforts to support clinician-scientists working across different research areas. We believe that supporting early-career investigators is an investment in the brain disease treatments and cures of the future. 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. 

Srikant Rangaraju, MBBS, MS, received an American Brain Foundation-funded research grant in 2014 and has since received NIH grants in 2021 and 2022 to further his research. Dr. Rangaraju is an associate professor in the department of neurology at Yale University School of Medicine. In his previous position at Emory University, he established the Rangaraju Lab. The research group has since relocated to Yale University, and the team aims to develop a better understanding of how the brain’s immune system—including immune responses tied to a type of brain cell called microglia—contributes to the development and progression of neurologic diseases.

Dr. Rangaraju’s research is focused on developing new therapies that can be used to better control inflammatory immune responses in brain diseases like Alzheimer’s disease and stroke. We talked to Dr. Rangaraju about the importance of funding early-career research and the potential for treatments and findings about one disease to further our understanding of other diseases.

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

Why were you inspired to study the brain?

Neurologic diseases disproportionately impact the lives of patients as well as their caregivers. When I was in medical school, we knew very little about how these diseases evolve, and there was a large unmet need for specialists in neurologic care. Within neurology, I was specifically drawn to stroke and Alzheimer’s disease, two major neurologic diseases that desperately needed effective treatments. 

What specific issue is your research trying to address? 

The brain’s immune system mainly consists of cells called microglia, which play an important role in how the brain develops and matures and become activated in the brain as we get older. Our research program is focused on how these elements of the brain’s immune response contribute to different neurologic diseases. For example, if microglial cells ‘over-respond’ to pathological proteins that aggregate in the brain, this can make matters worse by causing the loss of neurons and lead to cognitive problems. Our research focuses on the protein called Kv1.3, which partially controls how microglial cells respond.

What did your ABF-funded Next Generation Research Grant enable you to work on?

I was awarded the research grant in 2014, right when I finished my fellowship training. The grant provided me with ample time and some of the necessary funds to hire the personnel and carry out the research for my project. It had a significant impact on my research program because it allowed us to generate new data based on some preliminary experiments, which is critical to being competitive for larger grants, like those [I later received] from the NIH.

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

For the American Brain Foundation grant, we proposed looking at brain tissue from patients who had passed from Alzheimer’s disease and brain tissue from mouse models to observe levels of the Kv1.3 protein. Was Kv1.3 truly present at higher levels in the brain tissue with Alzheimer’s disease compared to brain tissue that did not have disease? If we saw that, then it would provide a rationale for studying this further by blocking or targeting this protein in mouse models. 

That hypothesis turned out to be true. Based on that success, we were able to secure career development awards and funding from the NIH to look at Kv1.3 blockers as potential therapies [for Alzheimer’s] in mouse models. That grant brought us one step closer to bringing some of these potential treatments and preclinical discoveries to patients.

What potential does this research into the brain’s immune response have for other disease areas?

There are many common aspects to immune system response, so understanding how the immune system or the microglia are important in Alzheimer’s disease and stroke can lead to therapies which can be potentially shared across multiple neurologic diseases. For example, if the mechanisms are similar between the delayed phases of ischemic stroke and Alzheimer’s and Parkinson’s, then treatments targeting those mechanisms can be used to achieve a beneficial effect across multiple diseases. Indeed, the Kv1.3 protein has turned out to be relevant to not just Alzheimer’s disease but also Parkinson’s disease and stroke.

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

We already have effective treatments for stroke, but they are focused on the very early window after stroke happens. We really don’t have treatments that can be effective after the first 24 hours. I’m hopeful that in the next decade, we will be closer to some immune-focused strategies to reduce the burden of stroke.

Additionally, I hope that in the next 10 years, we will have not just minimally effective but modestly effective treatments that can reduce Alzheimer’s disease progression.

If we were able to fund all of the research projects and areas of investigation we know are critically important today, how far along might we be?

I have been fortunate, but there are many researchers who have not been this fortunate, and that’s not for want of expertise or training. We lose a lot of highly skilled, very intelligent investigators because they’re not able to get funding at early career junctures. Additionally, the research money available is less than what is really needed to battle these diseases. If we had support for all the research projects looking to secure funding right now, I think we would definitely be closer to cures.

Why is it so important to fund research?

Funding is extremely important for research because it is the primary way in which new ideas can be developed and tested in the laboratory. This leads not only to new understandings of how brain diseases develop and progress but also to new drugs and treatments.

I’ll give one example from the stroke field. As of seven to eight years ago, the only major treatment that was available for the treatment of acute ischemic stroke—which happens when a blood clot blocks an artery and a part of the brain dies—was using “clot busting” medicines. These medicines are very time sensitive because you want to restore blood flow as soon as possible, so if they’re given too late, the damage is already done.

At first, we only had medications that could be given by vein for a handful of patients who were lucky enough to come to the emergency room in time. That has now transformed to very, very effective treatments where endovascular specialists can actually [insert a catheter] into the artery, grab hold of the blood clot, remove it, and restore blood flow immediately. This is way more effective than some of the purely drug-based therapies that are available for stroke. This has transformed the field—many more patients are now eligible for these treatments because they can be treated for up to 24 hours. These advances in stroke therapies would not have been possible without seed funding to support high-risk pre-clinical stages of research.

Through the American Brain Foundation, I’ve been involved in the review process for other researchers who are applying for Next Generation Research Grants. It’s wonderful to see many promising physician-scientists getting these grants and then following on to see how their careers have evolved just like mine has. Also, awards such as those from the American Brain Foundation can have catalytic effects on early careers of immigrant physician-scientists in the U.S., who are often not eligible for many federal grants.

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.

MINNEAPOLIS, Oct. 17, 2023 – The American Brain Foundation has launched a $10 million cross-disciplinary research initiative that transcends traditional research and philanthropy boundaries by bringing together nonprofit organizations, pharmaceutical and biotech investors, philanthropists, and researchers. The initiative will provide funding for research by top neuroscientists to investigate the role of neuroinflammation in a wide range of brain diseases, both neurologic and psychiatric, including conditions as disparate as Alzheimer’s, schizophrenia, long COVID-19, and autism. The research initiative is part of the American Brain Foundation’s existing Cure One, Cure Many program, which promotes innovative, cross-cutting approaches to brain disease diagnosis and treatment.

There are over 600 known brain diseases, and neuroinflammation plays a role in nearly all of them—yet researchers still understand very little about how this common immune response contributes to the development of neurologic disorders. This large-scale, multi-phased initiative will support research to better understand how neuroinflammation acts as an underlying mechanism across nearly all brain diseases and affects people of all ages.

 

Unprecedented Cross-Industry Collaboration
The American Brain Foundation is spearheading an unprecedented cross-industry collaboration between scientists, pharmaceutical organizations, venture and private philanthropists, and patient advocacy and nonprofit organizations like the National MS Society, the Encephalitis Society, the NFL Players Association, Gates Ventures and the WoodNext Foundation. 

“The NFLPA proudly joins hands with the American Brain Foundation in advancing this extraordinary $10 million neuroinflammation initiative,” said Dr. Thom Mayer, medical director for the NFL Players Association. “We are proud to be part of this historic collaboration, uniting diverse stakeholders to tackle the impact of neuroinflammation on brain health. Together, we aim to improve diagnosis, prevention, treatment, and ultimately discover cures for these conditions.”

The American Academy of Neurology, the American Brain Foundation’s key research partner, will have a central role in the vetting of applications and selecting awardees. Chairing the initiative is Dr. Stephen Hauser, American Brain Foundation board member and director of UCSF Weill Institute for Neurosciences. 

“Bringing together partners from so many different fields is the fastest, most innovative way to drive forward innovative research and harness the potential of the immune system to treat, repair, and even cure some of the most devastating brain diseases and disorders,” said Dr. Hauser. “The research funded by the initiative will impact diseases as widespread and different as Parkinson’s, encephalitis, multiple sclerosis (MS), Alzheimer’s, brain trauma, autism, and others.”

This large-scale, coordinated effort to support research from a wide diversity of partners and donors demonstrates both the range of concern about the impact of neuroinflammation on brain health and its significance as an emerging public health issue.

“In recent years there has been an increasing interest in neuroinflammation, the role it has to play in the brain, and whether it can be a catalyst in our understanding of so many other diseases and disorders that we know so little about,” said Dr. Ava Easton, chief executive of the Encephalitis Society. “Taking a global and collaborative approach is both bold and forward-thinking. By coming together, investing in research, and improving our knowledge of neuroinflammation, we will improve diagnosis and prevention, discover new treatments, and, crucially, find cures.”


Why Neuroinflammation?
Inflammation is the immune system’s natural response to injury, illness, and infection. Neuroinflammation—an inflammatory immune response in the brain and spinal cord—plays a role in brain health at all stages of life, from fetal development to aging, and contributes to the formation of nearly every brain disease. 

Understanding both the protective and detrimental effects of neuroinflammation will allow doctors to more precisely target diseases as varied as Alzheimer’s disease and other dementias, stroke, Parkinson’s disease, ALS, MS, encephalitis, and COVID-19-associated brain disease. Together, these diseases affect 60% of the U.S. population and at least 3 billion people worldwide, and they attack the essence of what makes us human: thought, speech, emotion, and movement.

“We believe in the ‘Cure One, Cure Many’ ethos of the American Brain Foundation,” said donors from a private family foundation that made a $2.5 million donation to the initiative. “This is why we felt it was important to make an investment in the innovative neuroinflammation initiative, which will shed light on a mechanism that is present in almost every brain disease and neurologic condition.


Driving Research Advancements Across Multiple Brain Diseases
The American Brain Foundation will make phase 1 grants from an initial pool of $5 million in 2025 as it raises an additional $5 million for phase 2 grants. Phase 2 will be an opportunity for the Foundation and its partners to fund new projects and to provide follow-up funding to the most promising Phase 1 projects to advance translation. 

“We are very pleased to support this novel initiative, which has the potential to uncover common mechanisms across many different brain diseases and disorders of the nervous system, including multiple sclerosis,” said Dr. Bruce Bebo, executive vice president of research at the National MS Society. “This venture holds promise for identifying new pathways to stop destructive immune activity in millions of people living with these disorders.”

The American Brain Foundation will begin soliciting research proposals for the neuroinflammation initiative in spring 2024, and research will begin in 2025. To learn more about the neuroinflammation initiative and other currently funded research, visit AmericanBrainFoundation.org.


About the American Brain Foundation
The American Brain Foundation promotes and invests in research across the whole spectrum of brain diseases and disorders knowing that when we find a cure for one brain disease, we will find cures for many. Our holistic approach focuses on building bridges between different brain diseases to break new ground in both research and application.

 

Media Contact
Emily Christian
[email protected]
612-928-6319

Learn how gene therapy for diseases like amyotrophic lateral sclerosis (ALS) are transforming brain disease research and treatment.

The developing field of gene therapy holds promise for treating a wide range of brain diseases by targeting their underlying genetic causes. Emerging gene therapy research is already providing answers for some forms of amyotrophic lateral sclerosis (ALS) and has resulted in successful treatments for spinal muscular atrophy (SMA).

One of the leading researchers of ALS and other neurodegenerative diseases, Timothy Miller, MD, PhD, David Clayson Professor of Neurology at Washington University School of Medicine in St. Louis, joined us for a webinar exploring the topic of gene therapy for brain disease. During the webinar, Dr. Miller discussed the role of genetics research in creating innovative therapies, how these findings impact people living with brain disease, and what this means for the future of brain disease research.

Gene Therapy Advancements for ALS

For most of his career, Dr. Miller’s research has focused on treating ALS. This progressive neurodegenerative disease is caused by the death of motor neurons—cells in the brain and spinal cord—leading to issues with mobility, speech, swallowing, and breathing. The rate and severity with which ALS progresses varies, but most people live only three to five years after diagnosis. 

“Most ALS is not genetic, but approximately 10% is,” says Dr. Miller. Of all genetic ALS cases, 10-20% are caused by a mutation in a gene called SOD1. This is the gene Dr. Miller and his team have targeted for treatment.

“If you think about abnormal genes, there’s a change in the genetic code that leads to a change in the RNA, and that leads to the buildup of toxic protein [responsible for causing nerve cell death in ALS],” explains Dr. Miller. RNA is a substance in the body that translates the genetic instructions in our DNA into biological processes, like the production of various proteins.

Researchers are currently working with a therapy called antisense oligonucleotides (ASOs), which work at the level of RNA. “The RNA is targeted, and the antisense drugs are a bit like an eraser,” says Dr. Miller. “[They] lower the RNA, and by lowering the RNA that’s producing this toxic protein, you then eliminate the toxic protein.”

A Promising New ALS Drug

Dr. Miller’s most recent research has focused on the drug Qalsody (formerly called tofersen). Qalsody is thought to work by binding to SOD1 RNA and degrading it, resulting in a decline in proteins created by the SOD1 gene. Reducing this toxic protein slows the progression of ALS and even improves symptoms for some people.

To measure Qalsody’s effect, Dr. Miller and his team looked at neurofilaments (structural components of neurons). When cells are damaged, neurofilaments leak and can be found in the blood and the fluid surrounding the brain and spinal cord. “These are biomarkers of nerve injury,” says Dr. Miller. “So high levels or low levels of neurofilament are indicators of how rapid the disease progression will be.”

The studies on Qalsody show a significant reduction of neurofilament levels after 12 weeks. “This data [shows] a substantial slowing of the neurodegenerative disease process,” says Dr. Miller. He notes that it took a little longer for individuals to see an effect on their symptoms, but they did notice results after about a year.

Loss of muscle strength is common for people with ALS, so Dr. Miller and his team wanted to measure Qalsody’s impact on that particular symptom. They found that people taking the drug had their strength stabilize after about 28 weeks. Even more promising, about 27% of people experienced increased strength over the course of the study. Dr. Miller and his team were thrilled by these findings.

“Who has seen somebody with ALS get better? Our answer, at least at our institution, is zero,” Dr. Miller says. “It’s not that it never happens, but it’s incredibly rare—and here in this study, 27% of people [are] getting better.”

Side Effects and Treating Other Forms of ALS

Dr. Miller points out that in rare instances, Qalsody has side effects, including spinal cord inflammation, optic nerve swelling, and chemical meningitis. He encourages anyone with SOD1 ALS to discuss the risks and benefits of this treatment with their doctor. Overall, he says the drug was tolerated very well and is optimistic about its positive effect on treatment. 

“In my 30 years as an ALS physician, this is the first study where I’ve personally seen people stop progressing and some of them recover function,” says Dr. Miller.

While Qalsody has shown promising results, Dr. Miller notes that it can only help about 1-2% of all individuals with ALS. “I think the challenge to researchers around the globe is now to find the right drug for the rest of ALS [cases],” he says.

How ALS Research Impacts Other Brain Diseases

Perhaps the most exciting thing about the recent success of gene therapy for ALS is what it means for the treatment of other brain diseases

While the SOD1 gene was targeted for ALS, other defective genes can be targeted to treat different diseases with genetic causes or variants. “The same blueprint that we’ve outlined here can be used for a number of other genetic disorders,” says Dr. Miller. “This is a technique that’s broadly applicable, and I think this can be done for many different neurodegenerative diseases.”

As an example, Dr. Miller points to emerging studies around using gene therapy to treat Alzheimer’s disease. “We have data showing that an antisense oligonucleotide approach can lower the levels of one of the proteins associated with Alzheimer’s disease,” he says. 

Clearing out clumps of misfolded proteins in the brain has a significant impact on slowing the progression of Alzheimer’s disease, and researchers are investigating whether such a treatment may also be able to improve symptoms.

The Importance of Gene Therapy on Future Brain Disease Research

Only through additional research will we unlock the full therapeutic potential of gene therapy. Because brain diseases are interconnected, finding treatments and cures for one will lead to treatments and cures for many others. Each new discovery has a ripple effect, offering hope and life-changing solutions for the millions of people impacted by brain disease worldwide.

Dr. Miller is excited about the future of gene therapy and its enormous potential to improve lives. He shares a testimonial from an individual with ALS who has already benefited from this treatment as a reminder of why this research is so important: 

“On the one-year anniversary of my diagnosis, when I should have died, I instead kicked a football 47 yards. On the second-year anniversary, I drove a golf ball 275 yards. On the three-year anniversary, I hit a baseball pitched by my son off the center field fence, then hoisted him in the air. That’s joy made possible by science.”

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.

Learn how brain researchers used AI models to reconstruct music from brain waves and what this new study may mean for brain-controlled speech prosthetics.

Scientists recently got one big step closer to creating better assistive technology devices for people who can’t speak. Brain researchers at Albany Medical Center trained a computer to analyze the brain activity of individuals while they listened to a Pink Floyd song and then successfully reconstructed a section of the song using a computer model. This was the first time such a model—based on computer learning and artificial intelligence—was able to reconstruct a recognizable piece of music using only neural patterns. Prior research had only been able to reconstruct sounds similar to the music a person was hearing.

The researchers emphasized that this technology is still in early experimental stages, and the reconstructed audio was relatively low quality. However, this is a huge step forward in brain research that has vast implications for creating more expressive technology to help people with brain damage or speech-related disabilities communicate.

An Innovative New Study With Exciting Results

Published in the journal PLOS Biology in August, this new study focused on 29 participants with epilepsy. The individuals were chosen because they already had nets of electrodes implanted in their brains as part of a deep brain stimulation treatment for epilepsy. Participants listened to Pink Floyd’s “Another Brick in the Wall, Part 1” while a computer recorded their brain signals. Researchers then analyzed data from each participant, determining which areas of the brain were activated during the song and recording which frequencies created a response in each of these areas.

Because the number of frequencies represented impacts the quality of an audio recording, the researchers used 128 frequency ranges to effectively reconstruct “Another Brick in the Wall” based on the gathered data. This required them to train 128 computer-learning models to convert the brain signals gathered by electrodes into audio, ultimately producing a song snippet. While it sounds slightly muffled, the resulting music clip is still distinctly recognizable. (You can listen to the original clip and the AI-reproduced version here.)

Each participant’s song recreation was slightly different, which researchers credit to the unique locations in which electrodes were placed in each individual’s brain. Interestingly, they believe some of the variance was affected by personal characteristics, such as whether the individual was a musician. Additionally, the researchers could only see brain activity where doctors had placed electrodes for seizure treatment. This limited the amount of data that could be captured and also accounts for part of why the recreated songs sound hazy.

Unlocking How the Brain Processes Music and Sound

The study’s researchers chose the famous track from Pink Floyd’s 1979 album, The Wall, for a few different reasons. To get optimal results, they wanted to use music that the older patients enjoyed. Researchers also wanted a complex song with both vocal and instrumental sections to analyze how the brain processes melody versus language.

The study’s findings confirmed that while both hemispheres of the brain play a role in music perception, the right hemisphere is more involved than the left. When people process plain speech, the left hemisphere of the brain is more active. This helps explain why some people who have experienced strokes may struggle to speak but can sometimes sing simple sentences

Researchers found a spot in the brain’s temporal lobe that seems particularly active in processing music, with a specific subregion connected to rhythm. This supports previous research, which has found that different parts of the brain are linked to processing particular aspects of music, such as pitch and timbre (tone quality).

Promising New Applications for Brain-Controlled Prosthetics

This new study is more than just an interesting but novel application of AI in brain research. The findings are a significant step toward creating improved brain-controlled prosthetic technology for people who can’t speak. The hope is that as researchers develop more advanced models based on this technology, it will result in better prosthetics and other assistive technology for people who have lost the ability to speak due to brain disease or brain damage.

Over the past decade, scientists have made major advances in translating the brain’s electrical signals into words—but there’s more to speech than simply saying words. A lot of information comes from what linguists call prosodic elements: the rhythm, stress, and intonation in someone’s speech. Think about how mechanical a robotic voice is—that’s what speech without prosodic elements sounds like.

If scientists better understand how the brain processes music and complex sounds, they can use this knowledge to develop improved speech prosthetics—devices that assist in the production of speech and language. More expressive speech prosthetics could translate brain activity in more complex ways to create more natural-sounding speech. This would enable more effective communication for people with speech issues due to neurologic diseases, strokes, or injuries.

Why Brain Research Is Crucial

The brain is a complex organ that plays a role in every one of our daily functions, so each new discovery in brain research has the potential to create a ripple effect. While the researchers’ ability to recreate a song based on brain activity is stunning, it’s incredible to think that continued research could restore the gift of speech to someone living with aphasia after a stroke. 

That’s why it’s essential to invest in research across a broad range of brain diseases and disorders—every new finding takes us one step closer to treatments and cures for the millions of people living with brain disease.

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 American Brain Foundation-led initiative has attracted cross-industry support and brings together top researchers to explore how neuroinflammation impacts a broad range of brain diseases.

 

We have launched a new neuroinflammation research initiative as part of our existing Cure One, Cure Many program. This large-scale, multi-phased initiative will support research to better understand neuroinflammation as an underlying mechanism of brain disease and brain health.

Neuroinflammation contributes to numerous diseases and affects all stages of life. Because all brain diseases are connected, insights into the role and impact of neuroinflammation will take us closer to discovering cures for many different neurologic conditions. Learn about this new initiative and how we are bringing together neurologists from many different fields to focus on brain inflammation research. 

Why Research Neuroinflammation?

Inflammation is the immune system’s natural response to injury, illness, or infection. Neuroinflammation is an inflammatory response that takes place in the brain and spinal cord. Sometimes this inflammation occurs as a helpful reaction of the immune system, but at other times, it can be a mechanism of disease or degeneration. For example, there is evidence that prolonged or excessive inflammation may be a key driver in the onset and progression of several neurologic diseases and disorders, including neurodegenerative diseases, epilepsy, multiple sclerosis, and others.

Nearly every neurological and neuropsychiatric disorder involves complex changes in the brain’s inflammatory response. Together, these diseases affect 60% of the US population and at least 3 billion people worldwide, and they attack the essence of what makes us human: thought, speech, emotion, and movement. We are confident this research will help many people, from individuals living with brain disease to their caregivers and loved ones.

A deeper understanding of specifically how and when inflammation occurs in the brain and spinal cord will aid in detecting, treating, and preventing a broad spectrum of brain diseases. “There are immune cells in our brains [that] we need in order to remain healthy,” says Stephen Hauser, MD, chair of the initiative’s scientific committee and a recipient of the American Brain Foundation’s 2022 Scientific Breakthrough Award. “These same immune cells can be harnessed… to rejuvenate or protect against brain disease. The immune system is so important not only for understanding and diagnosing disease, but also in fighting it.”

Connections Between Neuroinflammation and Brain Disease

Neurodegenerative brain diseases often involve a progressive decline of the nervous system. Research shows that high levels of neuroinflammation may accelerate brain aging and contribute to the progression of neurodegenerative diseases, including Alzheimer’s disease and related dementias, Parkinson’s disease, and Lewy body dementia. 

Neuroinflammation may also be linked to many different diseases beyond neurodegenerative diseases. Learning how neuroinflammation is connected to changes in the brain has the potential to reveal insights that can be broadly applied across diseases and disorders like: 

  • Alzheimer’s disease
  • Amyotrophic lateral sclerosis (ALS)
  • Brain tumor
  • Chronic pain
  • COVID-19-associated brain disease
  • Encephalitis
  • Epilepsy
  • Huntington’s disease
  • Meningitis
  • Migraine
  • Multiple sclerosis
  • Myopathy and neuropathy
  • Parkinson’s disease
  • Stroke
  • Traumatic brain injury

Recent research has also linked elevated levels of inflammation throughout the body to brain inflammation that could trigger depression. Exploring this connection further may reveal insights into a range of mental illnesses, including how to better personalize treatment.

Bringing Researchers Together to Cure Brain Disease

The American Brain Foundation is proud to bring together researchers from many different disciplines and fields, as well as sponsors from various industries. Because of the Foundation’s role in establishing this initiative, key contributors such as Gates Ventures, the National Football League Players Association (NFLPA), pharmaceutical organizations, private philanthropists, and nonprofits are joining forces to support neuroinflammation research. This kind of cross-industry support is unprecedented and shows the importance of researching neuroinflammation.

This new neuroinflammation initiative will provide funding to the world’s top researchers to pursue the most innovative, cross-cutting approaches to brain disease diagnosis and treatment. The American Brain Foundation is partnering with disease-specific research and patient advocacy organizations, including the National MS Society and the Encephalitis Society.

“We hope to generate the very best ideas through [research] across silos,” says Dr. Hauser. “We have an all-star team of evaluators and an incredibly exciting project… I think it will really accelerate the very best ideas and lead to answers for the millions of people and families who are affected by a brain disease.”

Donors are especially crucial in supporting ongoing research. Our neuroinflammation initiative has already received early funding from a private family foundation, which donated $4.7 million to the American Brain Foundation—the largest single gift in the history of our organization. From this generous gift, $2.5 million went to supporting the neuroinflammation initiative. The donors were inspired by our Cure One, Cure Many approach to research as well as by witnessing firsthand the toll dementia takes on families and caregivers.

“More and more people are living longer lives, and more and more people are developing brain diseases,” says Dr. Hauser. “So the stakes are high, but the opportunity is even greater.” 

We know this research will help the millions of people affected by brain disease worldwide, but we need your support. By funding innovative research projects, we can work together to make progress toward life without brain disease. 

We will begin soliciting research proposals for the neuroinflammation initiative in spring 2024. To learn more and see the request for proposals when it is made available, sign up for our research opportunities emails here.

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.

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.