At the 2024 Commitment to Cures Fundraising Gala, we raised essential funds that will support brain disease research, heard inspiring stories from people directly impacted by brain disease, and celebrated breakthroughs in research.

483 people attended the 2024 Commitment to Cures Gala in Denver, Colorado. This year’s fundraising gala was emceed by Kristen Aguirre, journalist, brain health advocate, and stroke survivor. 

To kick off the evening, Kristen shared her powerful story of suffering a life-changing stroke as a young adult, along with her inspiring recovery journey. Through medical intervention, therapy, and her own perseverance, Kristen learned how to walk again and ultimately returned to a career in journalism. She highlighted the necessity of funding research to deepen our understanding of brain diseases and disorders so we can one day prevent and cure them.

Throughout the evening, we honored people who have made a difference for those impacted by brain diseases, disorders, and injuries, and their families.

Each year, we celebrate one advocate for increasing public awareness about brain disease and the necessity of supporting research with the Public Leadership in Neurology Award. 

Cam Heyward accepts the Public Leadership in Neurology Award from host Kristen Aguirre.

This year, we recognized Cam Heyward, Pittsburgh Steeler and 2023 Walter Payton NFL Man of the Year with the Public Leadership in Neurology Award. Cam Heyward received this award for his critical advocacy work in raising awareness about brain cancer and cancers that spread to the brain and for his dedicated college scholarship fund that supports families affected by brain cancer.

We also honored researchers for making a difference in the field. Scientific research has the power to improve diagnosis, treatment, and outcomes by increasing our understanding of the brain and the conditions that can affect it.

Dr. Bruce Ovbiagele received the 2024 Scientific Breakthrough Award for his work to improve outcomes following stroke for people in underserved communities and address systemic biases in healthcare. Dr. Ovbiagele has also dedicated himself to training and mentoring researchers in underrepresented groups, which could one day lead to further innovation in research to support more people with brain diseases and disorders.

Cam Heyward and Dr. Ovbiagele join a respected group of award recipients whose work in advocacy and research are making an impact for those with brain diseases and disorders.

We recognized additional award recipients for their contributions to brain disease research. These included:

  • The 2024 winner of the Board Chair Award Jim Essey, for his commitment to the board of the American Brain Foundation and his family’s lifelong commitment to amyotrophic lateral sclerosis (ALS) research.
  • The winner of the 2024 Sheila Essey Award for ALS Research, Dr. Eva Feldman, for her research in fundamental and clinical neuroscience in relation to ALS along with work on ALS epidemiology. 
  • The 2024 winner of the Potamkin Prize for Research in Pick’s, Alzheimer’s, and Related Diseases, Dr. Francisco Lopera, for his impact on Alzheimer’s disease research.

In addition to the incredible people who received awards, we were honored to have special guest Kim Cade on stage to share her family’s moving story of life with ALSP, a rare terminal brain disease. 

Her brother, Jeffrey first noticed difficulty speaking while working as the organizer for a large youth soccer organization. Doctors thought he suffered a stroke, but his ability to speak and walk continued to worsen. He received a second misdiagnosis of multiple sclerosis before later genetic testing revealed he had adult-onset leukoencephalopathy with axonal spheroids and pigmented glia (ALSP), a brain disease with no cure. Genetic testing revealed that Kim and her other brother Joseph also have the gene responsible for ALSP. Now an advocate, Kim highlighted the need for research funding to discover potential ALSP treatments – and one day, a cure.

With the help of our donors, we raised $542,000 for brain disease research during the Commitment to Cures Gala. The proceeds raised from the event directly support the work of brain disease researchers by promoting and funding critical research that will lead to treatments and cures for many brain diseases and disorders. If you contributed this year, we sincerely thank you.

While Commitment to Cures only happens once a year, you can get involved with the American Brain Foundation and help fund essential research year round. You can subscribe to our newsletter, follow us on social media, or attend our free webinars to learn more. If you or a loved one lives with brain disease, you can join us by sharing your story.

ALS and MS have similar symptoms, which means research discoveries about one brain disease can help us understand the other—but there are also some notable differences.

Amyotrophic lateral sclerosis (ALS) and multiple sclerosis (MS) are neurologic diseases that share some similar symptoms. Because of those similarities, the two diseases are often confused, so it’s also important to understand their key differences.

We know that all parts of the brain are connected. That means research discoveries in one disease area will benefit our understanding of other diseases as well. This interconnection fuels our Cure One, Cure Many approach and our commitment to funding research across the full spectrum of brain diseases and disorders. Taking a closer look at the similarities and differences between ALS and MS gives us a concrete way to understand the importance of research across related diseases.

What is MS?

Multiple sclerosis (MS) is a chronic disease of the central nervous system, which includes the brain, spinal cord, and optic nerves. It is believed to be an autoimmune disease in which the immune system attacks myelin (the protective coating that surrounds nerve cells) and causes damage to the nerve itself. MS affects more than 1 million people in the United States and 2.5 million worldwide, with 10,000 new cases diagnosed each year.

This unpredictable disease interrupts communication between the brain and the body, causing muscle weakness, fatigue, and balance problems. Symptoms usually begin between ages 20 to 40. MS often causes distinct attacks in which symptoms get worse and then subside. People with MS may experience times of relapse, when symptoms increase or new ones start, followed by periods of remission, when symptoms are more mild.

While the cause of MS is unknown, abnormalities of the immune system, as well as genetic and environmental factors, could contribute to the risk of developing the disease. Because the disease affects two to three times more women than men, there may be a hormonal component.

What is ALS?

Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that attacks the nerve cells in the brain and spinal cord that control voluntary movement. As these nerve cells (called motor neurons) decline, they stop sending messages to the muscles, causing them to weaken, stiffen, twitch, and atrophy (lose muscle mass and deteriorate). About 30,000 people in the U.S. and more than 400,000 people globally live with ALS.

The rapidly progressing disease most commonly affects people between age 40 and 70 and has an average survival of three to five years. Early symptoms may affect one body part, but as the disease progresses, people with ALS often have trouble standing, walking, moving, swallowing, and speaking. ALS is ultimately fatal, typically due to respiratory failure when the muscles needed to breathe become too weak. 

While ALS symptoms are caused by a decline in motor neuron function, scientists are still learning why it occurs in some people and not others. In five to 10 percent of cases, the disease is inherited from a parent with the disease-causing gene. But in 90 to 95 percent of cases, the disease is sporadic, meaning it occurs without clear cause, risk factor, or family history. Men are slightly more likely to develop the disease than women, and some studies suggest military veterans are at greater risk. Ongoing research is looking at the impact of environmental, behavioral, and occupational factors.

Differences Between MS and ALS

While MS and ALS have similarities, the two brain diseases have some notable differences. Disease onset and progression is different. Symptoms of MS typically start between ages 20 and 40, while symptom onset for ALS is often later in life, between ages 40 and 70. While MS usually progresses in an unpredictable way with distinct attacks and periods of relapse and remission, ALS has a gradual onset and a rapid progressive decline.

The prognoses are also different. ALS is ultimately fatal, with an average survival of three to five years and only 10 percent of people living 10 or more years. On the other hand, people with MS usually live longer, between 25 and 35 years on average, while managing their symptoms with medication, therapies, and lifestyle changes.

While they seem similar, the diseases have different underlying mechanisms. In MS, the immune system is believed to attack nerve cells’ protective coating, damaging the nerves and disrupting communication between the brain and body. ALS causes motor neurons to decline and die, so they can no longer send messages to the muscles.

Similarities Between MS and ALS

The clearest similarity between MS and ALS is their common symptoms. Both diseases cause people to have difficulty moving due to muscle weakness, numbness, stiffness, or problems with balance and coordination. In both cases, the motor neurons, or nerve cells in the brain and spinal cord, are affected.

In addition, neuroinflammation across the central nervous system plays a role in both diseases. Neuroinflammation — swelling in the brain and spinal cord — is an immune response. It can be a natural, protective response to illness, injury, or infection, or in the case of MS, a faulty response that causes damage. Research shows that prolonged or excessive inflammation may be a key driver of the onset and progression of many neurologic diseases and disorders.

The Importance of Research

With these similarities in mind, more collaborative research could help us understand both ALS and MS. For example, the American Brain Foundation’s 2025 Cure One, Cure Many award supports a ground-breaking, cross-industry research initiative on neuroinflammation’s role in brain disease. Because neuroinflammation plays a role in nearly all brain diseases, including ALS and MS, understanding this aspect of the body’s inflammatory response will help develop innovative approaches that target multiple brain diseases.

We have already seen how exciting research discoveries and innovative studies have an incredible impact on brain disease treatments for both ALS and MS. But right now, these diseases do not have a cure. Research is the only way to better understand these diseases so we can find more effective ways to diagnose, treat, prevent, and ultimately cure them. When a breakthrough for one disease area leads to advancements in other diseases, we have the power to help even more people live a life without brain disease.

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

 

The latest COVID-19 research reveals surprising insights into how Long COVID affects brain health and promising treatment options for the future.

While the COVID-19 pandemic had an enormous impact on the entire world, certain populations were affected differently. People with brain disease faced additional challenges, including impediments to accessing care, the availability of medication, and additional risks for COVID-19-related complications.

Even people without brain disease found their brain health impacted by COVID-19 in the form of Long COVID. First coined in the spring of 2020, Long COVID refers to the long-term effects that continue or develop after some people have a COVID-19 infection. There are many symptoms, but some of the more common ones are fatigue, difficulty concentrating (brain fog), headaches, and changes in smell or taste. It’s now estimated that roughly 65 million people worldwide have been or continue to be affected by Long COVID. 

Though the World Health Organization declared an end to the pandemic in May 2023, COVID-19 continues to have a lasting effect. As more research emerges, we’re deepening our understanding of the SARS-CoV-2 coronavirus, but there is still much to learn about the impact of the pandemic and Long COVID on brain health.

New Insights Into How COVID-19 Affects the Nervous System

Within the first few weeks of the COVID-19 pandemic, doctors realized that the virus could cause neurologic symptoms ranging anywhere from brain fog and headaches to strokes and paralysis. While most people who contract COVID-19 do not develop serious neurologic symptoms, the risk is higher for populations that experience health disparities. 

Though we don’t know exactly how many people have been impacted, one study found that almost 13% of people hospitalized with COVID-19 developed serious neurologic symptoms. Thankfully, researchers are now getting closer to understanding how the SARS-CoV-2 coronavirus indirectly affects the brain. 

They believe that reduced blood flow and inflammation both play significant roles. COVID-19 could affect blood vessels and restrict blood flow to the brain, resulting in neurologic issues, including brain fog and strokes. Inflammation throughout the body also triggers brain inflammation, which can cause injury. This leads researchers to believe that the immune system’s response to the COVID-19 virus could damage the brain by causing it to become inflamed, resulting in neurologic symptoms like sensory changes, movement issues, and paralysis.

This emerging research paints a clearer picture of COVID-19’s impact on the brain, paving the way for potential treatments. It also reveals insights into the effects other viral infections could have on the brain.

The Latest Research Suggests Long COVID Could be a Brain Injury

Recent research may provide a new explanation for the persistent cognitive and mental health issues experienced by some people with Long COVID. Researchers believe COVID-19 could be causing viral-borne brain injuries that lead to ongoing symptoms. A recent study of people hospitalized with severe COVID-19 found evidence of brain injury a year after initial infection. 

Using biomarkers, brain scans, cognitive tests, and self-reported symptoms, researchers determined that long-term brain injury had occurred, resulting in cognitive deficits equal to 20 years of brain aging. Many participants also experienced anxiety, depression, or post-traumatic stress disorder.

These findings validate many people who experience these symptoms but struggle with clinician skepticism. Brain scans and biomarkers provide objective evidence of brain injury, allowing these individuals access to available treatments.

Researchers are concerned the brain aging associated with the SARS-CoV-2 coronavirus could have long-term repercussions, including an increased susceptibility to dementia and Alzheimer’s disease. Further research is vital to fully understand how the virus works and enable scientists to discover preventative measures and mitigate long-term consequences.

How COVID-19 Affects People Living With Dementia

COVID-19 appears to have a significant negative impact on those living with dementia. A recent small-scale study observed the cognitive effects of COVID-19 on individuals with several different types of dementia. Researchers found that the SARS-CoV-2 coronavirus rapidly increased brain deterioration in the study participants, regardless of the type of dementia they had.

The study followed 14 people with dementia who had contracted COVID-19. Researchers conducted brain imaging and cognitive assessments at the time of infection and one year after. The results showed a significant decline in cognitive function (including memory, attention, and speech) as well as increased depression and fatigue. All participants also experienced cerebral atrophy (lesions in the brain and the loss of neurons and connections between neurons).

Although it was small, this study still demonstrates that COVID-19 causes severe neurologic complications in people with all types of dementia. With more research, we can learn why this deterioration happens and develop treatments to slow its progression.

Emerging COVID-19 Research Provides Hope for the Future

Emerging research shows that there may be a way to mitigate the brain aging caused by COVID-19. Researchers found that COVID-19 accelerates the presence of senescent cells, a type of brain cell that naturally accumulates as people age. These cells cause inflammation and degeneration, which leads to cognitive issues. Using synthetic brain models created from human cells, researchers screened various therapeutic options. They discovered four drugs that could target and remove the senescent cells caused by COVID-19. Researchers expect this study will lead to widespread use of these drugs to treat ongoing neurologic symptoms experienced by people with Long COVID and other viral infections.

While we’ve made great strides in understanding COVID-19 and the effects of Long COVID over the past four years, there is still so much work to be done. Every study deepens our understanding and has the potential to provide better care for people affected by the SARS-CoV-2 coronavirus. Further research also has the potential to unlock insights into neurologic issues caused by different viruses. As we know, research progress in one area of brain disease will lead to treatments and cures for many other brain diseases, disorders, and injuries.

The American Brain Foundation delivered vital information to the community during the COVID-19 pandemic and remains committed to sharing the latest research advances. Join us in our mission to support cutting-edge research in the fight against brain disease—donate today to make a difference.

The Potential Hidden Connection Between Air Pollution and ALS

One of the many ways the American Brain Foundation promotes and funds brain disease, disorder, and injury research is through our Next Generation Research Grants. This program supports innovative investigations by the best and brightest early-career researchers, including Jill Goslinga, MD, MPH, an Assistant Professor of Neurology at the University of California, San Francisco. 

In high school, Dr. Goslinga’s father was diagnosed with amyotrophic lateral sclerosis (ALS), a neurodegenerative disease that attacks the nerve cells in the brain and spinal cord that control voluntary muscle movement. Most people with ALS develop muscle weakness over time that affects their respiratory system and, in many cases, leads to respiratory failure. 

“There’s plenty of evidence that being exposed to certain types of air pollution might increase the risk of developing ALS,” says Dr. Goslinga, “and there’s also evidence that, among people who already have ALS, really bad wildfire smoke exposure, pollution, and smog exposure can lead to hospitalizations.” Despite this, it’s rarely been studied whether people with ALS who live in areas with bad air quality experience worse ALS symptoms sooner or have shorter lifespans. 

With that in mind, Dr. Goslinga set out to determine if she could make this connection and, in the future, determine better treatment plans for people with ALS. 

Unraveling the Link Between Air Quality and ALS

Like many of us, Dr. Goslinga never paid much attention to air quality—until she did her Master’s in Public Health. During a class on environmental science, she was confronted with the data on how many health risks increase with poor air quality. Evidence suggests that the effects of the California wildfires since 2020 have significantly increased air pollutants and even negated years of efforts dedicated to controlling air pollution. 

We don’t currently understand the effect of intermittent wildfire associated air pollution on all neuromuscular diseases. But we do know that ALS, among other neuromuscular diseases, is driven by neuroinflammation, an inflammatory response within the brain or spinal cord that certain ALS medications specifically target to relieve symptoms. The respiratory system as a whole is the biggest vulnerability for people with ALS and other neuromuscular disorders. As their symptoms increase, it becomes harder for them to take deep breaths, and they are more likely to have vulnerable lungs. Therefore, anything that directly affects the lungs, such as air pollution, can exacerbate these symptoms. 

Dr. Goslinga’s research will look at people with ALS across the country and record snapshots of their health over time. She will then retrieve high-quality historical data of different air quality measures. Depending on where a person lives in their geographical region, Dr. Goslinga and her team will calculate when wildfires have affected certain people, how severe the wildfires and resulting air pollution were, and how this has affected other clinical data. 

Put simply, the research will look at the before and after of wildfire smoke exposure for different populations—including those in different socioeconomic classes and geographical areas—and determine the progression of their health over time. Finding clear evidence that wildfires or other kinds of intermittent poor air quality and pollution affect people with ALS will give Dr. Goslinga and others the justification and tools needed to go to donors and other funding mechanisms to propose a more intensified study. 

The Connection Between Air Pollution and Neurodisparity

The question and research of air pollution and its effect on brain diseases also has huge health justice and equity implications. 

“In California, some of my most vulnerable ALS patients are farm workers from the Central Valley, which is surrounded by mountains,” says Dr. Goslinga. “On average, there’s much worse air quality in Central Valley as compared to San Francisco or the surrounding wealthy suburbs.” This shows a clear line between regions with worse air quality, people with ALS who are less likely to have good outcomes, and socioeconomic status. 

Her research aims to reveal the social and equity implications of different levels of air pollution exposure and lead to stricter regulations and safety for people who live in regions with relatively poor air quality. She also hopes that her research will identify specific populations of people with ALS who need additional support to reduce their exposure to air pollution, especially during wildfires. 

A Growing Relationship Between Climate Change and Brain Disease

As climate change worsens, the United States Environmental Protection Agency warns that wildfires are lasting longer, becoming more frequent, and burning more acres of land. Factors affecting the increase in wildfires and their intensity include warmer springs, longer summers, and drier soil and vegetation.

Evidence also shows a connection between environmental toxins and brain diseases and disorders. For ALS and Dr. Goslinga’s project, this evidence potentially indicates a larger connection between pollution and neuromuscular diseases overall. “If we could solve ALS, we would be so much closer to solving Alzheimer’s and Parkinson’s,” says Dr. Goslinga.

Once she builds a robust model to analyze ALS care, Dr. Goslinga hopes there will be similar observational data for other neuromuscular conditions. Following the American Brain Foundation’s philosophy that when we cure one brain disease, we’ll cure many, this shows us that uncovering potential causes and exacerbations of symptoms in one disease, like ALS, will lead to better treatments and outcomes for many. 

Laying the Groundwork for Life Without Brain Disease

Since our founding, the American Brain Foundation has been bringing researchers and donors together in the fight against brain disease. Our Next Generation Research Grants have provided nearly 42 million dollars to fund the innovative research of early-career investigators, encouraging passion for research and laying the groundwork for future success. ALS research has seen incredible advancements since Dr. Goslinga’s father was diagnosed, and we’re committed to helping her find the next frontier.

As a grantee of our 2024 class, Dr. Goslinga is not only getting important funding for her research, but she is also meeting like-minded scientists. Another researcher in our 2024 class, Brittany Krzyzanowski, PhD, is studying the connection between Parkinson’s disease and elemental carbon. Projects like Dr. Goslinga’s and Dr. Krzyzanowski’s are especially important as we see a rapidly changing climate and neurological conditions becoming the leading cause of ill health and disability worldwide. 

“Brain disease can happen to anyone, at any time, and funding research for it is our only hope of one day living life without brain disease,” says Dr. Goslinga. As people live longer, more and more of us are being affected by brain diseases, disorders, and injuries—both as patients and caregivers. It’s more important now than ever to fight these diseases through research focused on finding treatments and cures.

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

Learn what causes seizures, how they’re diagnosed, and which treatment options get the best results with minimal side effects.

 

About 1 in 10 people will have a seizure in their lifetime. Despite how common they are, seizures are often misunderstood. We recently hosted a webinar to explore what people should know about this complex neurologic phenomenon, including common causes, diagnostic methods, and effective treatments.

American Brain Foundation board member Jacqueline French, MD, was joined by two Mayo Clinic neurologists and seizure experts, Alyx Porter, MD, a neuro-oncology specialist, and Greg Cascino, MD, an expert in drug-resistant epilepsy. Dr. Porter and Dr. Cascino provide valuable insights and foster a deeper understanding of the challenges of living with seizure disorders.

What are Seizures?

A seizure is an uncontrolled burst of electrical activity between neurons (brain cells). It causes temporary changes in movements, sensations, and states of consciousness. Some people confuse the terms seizure and epilepsy, but seizures are a symptom, and epilepsy is a disorder. When an individual has recurrent and unprovoked seizures, they have a seizure disorder or epilepsy (the terms are synonymous). “It’s one of the most common chronic neurologic disorders,” explains Dr. Cascino. “Perhaps one in 26 Americans will develop a seizure disorder during their lifetime.”

Seizures are divided into categories based on how they originate: generalized onset seizure (affects both sides of the brain at the same time), focal onset seizure (starts in one area of the brain), and unknown onset seizure (undetermined origin).

What Causes Seizures?

Dr. Cascino estimates that about one-third of individuals experiencing seizures have a symptomatic lesion (an abnormal area of tissue) in their brains as the cause. Tumor, stroke, blood vessel malformation, and traumatic brain injury (TBI) can all lead to symptomatic lesions that cause seizures. As a neuro-oncologist, Dr. Porter encounters many individuals who experience seizures due to brain tumors. She explains, “It really does depend on where in the brain the mass arises as to whether or not a patient may present with a seizure or may experience seizures as part of their experience.” Dr. Porter notes that younger people with brain tumors often experience seizures as their first noticeable symptom. Focal Cortical Dysplasia (FCD) is another condition that causes seizures, often leading to a diagnosis when individuals are younger. FCD involves abnormal brain cell development and organization and is a common cause of treatment-resistant epilepsy. 

Unfortunately, it’s more challenging to determine the cause of seizures for the majority of people experiencing them. Ongoing research is starting to provide valuable insight into cases like these. Researchers are discovering that a number of these individuals have genetic epilepsy—even without a family history of seizures. There are also some interesting connections between epilepsy and other disorders affecting the brain. “We now know that a number of autoimmune neurologic diseases may be associated with focal and generalized seizures,” notes Dr. Cascino.

How are Seizure Disorders Diagnosed?

Identifying that a seizure has occurred is always the first step in getting a diagnosis. That’s why it’s important to remember that seizures present in many different ways—and they’re not always obvious. “Sometimes, there might be tingling sensations. Sometimes, people might have difficulty getting the words out. There are all kinds of presentations,” explains Dr. Porter. Remembering the phrase “short, sudden, sometimes strange, and similar spells” can help people recognize when seizures may be occurring.

After experiencing a seizure, individuals should visit their primary care physician or a neurologist to begin a comprehensive and multidisciplinary evaluation. The doctor will try to determine the type of seizure and what caused it. They will first evaluate medical history, asking many questions to gather as much information as possible. This is often followed by a neurologic exam assessing the individual’s thinking, function, and senses.

Brain imaging is the next step to look for abnormalities in brain structure. CT scans, CAT scans, and MRI scans are all used to identify anatomical issues that lead to seizures, including tumors, TBI, and abnormal brain development. These scans don’t always tell the whole story, so doctors might order an electroencephalogram (EEG) to monitor the individual at a clinic or in their home. An EEG is a test that shows patterns of brain activity, revealing whether it is abnormal or normal. Abnormal patterns can occur due to various conditions, but doctors can identify a distinctive type of pattern associated with epilepsy.

What are Effective Treatments for Epilepsy?

The cause determines some treatment options, but seizures can still be controlled even if the cause has not been identified. The goal is always to reduce seizure activity, improve quality of life, and reduce the likelihood of emergency events.

Dr. French explains that there are several effective anti-seizure medications on the market. Some medicines are designed to work for different types of seizures, and individuals may have to try a few options before they find what works for them. “Fortunately, two-thirds of the time, that does control all the seizures, and an individual can go about their life as they had before,” she says.

People with drug-resistant seizures may require additional medical and surgical care. Electrical stimulation is a treatment option that involves implanting a device that delivers electrical stimulation to inhibit or control seizures. Vagus nerve stimulation, responsive neurostimulation, and deep brain stimulation are all types of electrical stimulation. Surgery is another treatment option for some people with drug-resistant seizures. It works best for those whose seizures consistently start in the same place in the brain. Thermal ablation, which destroys pinpointed brain cells, and lobectomy, which removes the area where seizures begin, are two surgical options.

Dr. Cascino also wants to ensure that all people with epilepsy are aware of and have immediate access to rescue treatments. Different from daily seizure medications, rescue treatments are fast-acting drugs used as needed to avoid emergencies. They can be easily administered by a caregiver and should be used if a seizure occurs in a more intense, longer-lasting, or more frequent pattern.

Why More Epilepsy Research is Crucial

The past few decades have seen many advancements in uncovering the causes of epilepsy and in the use of exciting new treatments. However, much more work must be done to understand the underlying mechanisms responsible for the disorder. There’s also a need for more medication options with fewer side effects and new therapies for people with drug-resistant epilepsy.

The American Brain Foundation is currently funding epilepsy research exploring the potential shortening of clinical trials and the role of the microbiome in drug-resistant epilepsy. “In the last ten years, we’ve granted over a million dollars to epilepsy research, and we will certainly be providing more investment in epilepsy research in the future,” shares Dr. French. 

Because brain diseases are interconnected, research breakthroughs have a magnified impact. Discovering a cure for one disease or disorder often leads to cures for many more. That’s why it’s so important to support more research. “We can’t do our work and improve the lives of people with epilepsy and other brain diseases without the support of our donors,” says Dr. French.

The American Brain Foundation is dedicated to funding research on epilepsy and other brain conditions. Join us in our mission to find cures for all brain diseases and disorders—donate today to make a difference.

Research on stroke recovery has the power to improve outcomes and support people as they navigate life post-stroke.

 

Stroke is a disease that occurs when the brain’s blood supply is interrupted as the result of a blood clot or hemorrhage. Every year, more than 800,000 people in the U.S. experience stroke, and 140,000 people die from the disease.

Stroke is the leading cause of permanent disability in adults. After a person experiences a stroke, their life can change drastically and they may not be able to live the same way they did before. This brain disease often greatly impacts the individual as well as their family and loved ones.

Stroke recovery presents many challenges. At the American Brain Foundation, we’re committed to research that can help improve the recovery process and its outcomes. It’s important to support people recovering from a stroke so they can have more independence and live their lives closer to how they did before the stroke.

What Causes a Stroke?

There are two types of stroke: ischemic and hemorrhagic. An ischemic stroke happens when the blockage of a blood vessel stops blood supply to the brain, depriving it of the oxygen and nutrients it needs. A hemorrhagic stroke occurs when bleeding from a ruptured blood vessel causes pressure to build in the brain, harming or killing brain tissue.

The best treatment for stroke is prevention. Some risk factors like high blood pressure, diabetes, and smoking can be treated through medication and lifestyle changes.

Other risk factors, such as age, sex, race, and medical history, cannot be changed. People who have had a stroke, transient ischemic attack (TIA), or heart attack, or those who have an immediate family member who has had a stroke, are at increased risk. Risk increases with age, approximately doubling for each decade of life after age 55.

What Happens When You Have A Stroke? 

It is important to recognize the signs of stroke so you can help yourself or your loved one get immediate medical care. A stroke can cause permanent brain damage, resulting in paralysis, cognitive problems, emotional control problems, and depression. The quicker a person having a stroke can receive treatment, the lower the risk of long-term brain damage and the higher the chance of a positive outcome.

The main warning signs of a stroke include sudden loss of balance and coordination, vision problems, paralysis or numbness in the face, arm, or leg (especially on one side), and slurred speech. Other common signs are confusion, dizziness or vertigo, severe headache, or trouble speaking, seeing, or walking. The acronym BE-FAST is a tool to help people remember and identify stroke symptoms:

Balance – Sudden dizziness or loss of balance and coordination

Eyes – Difficulty seeing

Face – One side of the face is drooping

Arm – Can’t lift their arm or are experiencing weakness or numbness in the arm or leg,       especially on one side of the body

Speech – Slurred speech or is unable to talk

Time – React right away and call 911

Research advancements in stroke treatment have expanded access to immediate medical care. In 2014, James C. Grotta, MD, a neurologist and clinical researcher on the American Brain Foundation’s Research Advisory Council, launched the nation’s first Mobile Stroke Unit (MSU). The MSU is a modified ambulance containing brain imaging equipment like a portable CT scanner and tPA “clot busting” medications. 

Now, lifesaving mobile stroke units are able to provide early response treatment directly to a person having a stroke. This accelerated process saves over 30 minutes of time and generates 10 times more treatments within the first hour compared to standard stroke management, leading to better clinical outcomes. Ongoing research by doctors like Alexandra Czap, MD continues to expand treatment protocols and show the impact of MSUs on stroke outcomes.

What Happens After a Stroke? 

After a person is diagnosed with stroke, what does stroke recovery look like? Stroke recovery includes therapy during an acute attack and post-stroke rehabilitation.

During an acute attack, treatment involves dissolving a blood clot in the case of an ischemic stroke or controlling bleeding in the case of a hemorrhagic stroke. Catheter- or IV-based treatments or minimally invasive surgeries may also be used.

Post-stroke rehabilitation may include a combination of different therapies, such as:

  • Physical therapy for regaining strength and mobility 
  • Occupational therapy for regaining skills to live as close to independently as possible 
  • Speech therapy to address speech, language, and swallowing issues 
  • Cognitive therapy to improve memory
  • Counseling to treat psychological effects

Outcomes often depend on how quickly a person is treated and how much brain damage occurred. Neurodisparities and socioeconomic factors also play a role in how someone recovers from a stroke. Next Generation Research Grant recipient Dominique Popescu, PhD, is currently researching the effects of social and psychological determinants, such as social isolation, stress, and depression, on stroke recovery. 

Relatedly, research shows that Black people are more likely to have more severe strokes and less likely to survive them, compared to white people. A person’s environment – everything from air quality and food accessibility to housing and transportation – can impact their stroke risk and underlying disease severity, as well as their access to recovery services.

Life After Stroke

After a stroke, many people live with some degree of disability, requiring major changes to their day-to-day life. For stroke survivors like Debra Meyerson, recovery is much more than the physical challenges — it also involves a change in identity.

Even after three years of intensive rehabilitation, a severe stroke left Debra with a limp, no function in her right arm, and limited speech. She had to give up her tenured position as a professor at Stanford University. These changes put her on a painful journey of rebuilding her identity as she transitioned from scholar to stroke survivor.

To improve life after stroke, we need further research. The work of Next Generation Research Grant recipient Margy McCullough-Hicks, MD, is a key example of research that can promote more effective treatment. Dr. McCullough-Hicks’s project aims to personalize an individual’s predicted outcome following a thrombectomy, a highly effective stroke therapy that currently isn’t used often because its benefits for stroke symptoms are difficult to predict.

The American Brain Foundation supports stroke research from acute treatment all the way to recovery. These discoveries can help people recovering from stroke have more independence and a life that looks more like their life pre-stroke. Through research, we can gain a better understanding of the many factors involved in stroke recovery — physical, environmental, emotional. We can offer greater hope and support to people recovering from this life-altering brain disease.

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. Donate today to support the cures and treatments of tomorrow.

Get to know the incredible advocates and researchers working to make our vision of life without brain disease possible. 

The American Brain Foundation is dedicated to pursuing the treatments and cures of tomorrow for brain diseases, disorders, and injuries. Just one discovery in one research area could impact our understanding of many other related diseases, leading to better treatments, opportunities for earlier diagnosis, and cures. But these discoveries are only possible thanks to the advocates, researchers, and donors who share and support our vision of life without brain disease. 

We hold our annual Commitment to Cures fundraising gala to acknowledge and honor all those who have contributed to this vision. Ahead of the event, we are thrilled to announce our 2024 Commitment to Cures awardees, individuals who have left a lasting impact on research and advocacy efforts. 

“Every honoree this year has shown remarkable dedication to advancing the understanding of brain diseases, disorders, and injuries and raising public awareness for them. Their contributions are laying the groundwork for future breakthroughs and prevention,” says American Brain Foundation Chair David Dodick, MD. “Looking ahead, we’re reminded that progress relies on the unwavering support of passionate advocates, diligent researchers, and the generous backing of our sponsors and supporters.” 

Join us in celebrating our award recipients and the milestones in research made at our 2024 Commitment to Cures Fundraising Gala in Denver on April 13. This night is dedicated to honoring the research advancements taking place and the people behind them. 

Cam Heyward: Public Leadership in Neurology Award

Pittsburgh Steeler and 2023 Walter Payton Man of the Year Cam Heyward will be recognized for his outstanding efforts in raising awareness about brain cancer and enhancing the well-being of individuals and families affected by brain tumors.  

In 2006, Heyward’s father passed away from a brain tumor caused by bone cancer. To honor the memory of his father, Heyward initiated a collaboration with The Southeastern Brain Tumor Foundation, raising $40,000 in scholarships to aid people with brain tumors and their families in pursuing post-secondary education. These scholarships, called Voices of Hope, have helped reduce the financial burden of living with brain tumors for many recipients and families. 

Primary brain tumors affect an estimated 700,000 Americans annually and living with them is exceedingly difficult and costly. By supporting the people most affected by them, Cam Heyward exemplifies the American Brain Foundation’s vision of working towards a life without brain disease. His commitment to making a difference through The Heyward House and Voices of Hope scholarships serve as a beacon of hope for individuals and families navigating the challenges of brain tumors. 

Bruce Ovbiagele, MD, MSc, MAS, MBA, MLS: Scientific Breakthrough Award

At Commitment to Cures, we will be acknowledging the tremendous impact Dr. Ovbiagele has had on the field of health equity and inclusion. His transformative research focuses on the development, dissemination, and translation of evidence-based behavioral interventions into clinical practice and community settings to improve stroke outcomes for underserved and vulnerable populations. 

Stroke, which occurs when the brain’s blood supply is interrupted due to factors such as a blood clot or hemorrhage, affects 800,000 people each year. Through his research, Dr. Ovbiagele is helping reduce systemic bias in medical research and address neurodisparities in the diagnosis and treatment of stroke. His pioneering work in stroke interventions not only improves outcomes for marginalized populations, but also addresses systemic biases in health care.

On top of his research efforts, Dr. Ovbiagele has also trained and mentored individuals from underrepresented groups in medicine, inspiring them to pursue high-quality research that could one day lead to more advancements in brain disease, disorder, and injury research. By mentoring a diverse new generation of researchers, Dr. Ovbiagele is ensuring a legacy of compassion, innovation, and inclusivity in the pursuit of essential research. 

Francisco Lopera, MD, PhD, Universidad de Antioquia, Medellin, Colombia: Potamkin Prize for Research in Pick’s, Alzheimer’s, and Related Diseases

The Potamkin Prize committee recognizes Dr. Francisco Lopera for his exceptional contributions to the understanding of the causes, prevention, treatment, and cure for Pick’s, Alzheimer’s, and related diseases. His research, which has spanned three decades, focuses on characterizing the genotypes and phenotypes of large Colombian families with Alzheimer’s and other neurodegenerative diseases. Dr. Lopera is also the Founding Director of the Group of Neuroscience at the University of Antioquia in Medellin, Colombia. With over 270 publications and multiple awards, including the Windblad Lifetime Achievement Award from the U.S. Alzheimer’s Association, he has truly made an impact on Alzheimer’s research efforts. 

Alzheimer’s disease impacts approximately 5 million individuals in the United States and is the leading cause of dementia. It comes with a devastating prognosis of fatality within a decade of onset, underscoring the critical need for advancements in research. 

Dr. Lopera’s community-based research in Colombia has identified both predictive and preventive genetic mutations for Alzheimer’s disease, opening up new avenues for research for treatments and cures. Reflecting the Foundation’s belief that curing one will cure many, this research also extends to other neurodegenerative diseases, including frontotemporal dementia (FTD), Parkinson’s disease, and Huntington’s disease. Dr. Lopera’s work offers hope for those affected by these devastating conditions and exemplifies the spirit of collaboration and innovation in the quest for effective treatments and cures. 

Eva Feldman, MD, PhD, University of Michigan / Michigan Medicine, Ann Arbor, MI: Sheila Essey Award: An Award for ALS Research

The Sheila Essey Award Committee recognizes Dr. Eva Feldman’s outstanding achievements in the field of amyotrophic lateral sclerosis (ALS) research. Her significant scientific contributions to both fundamental and clinical neuroscience in relation to ALS along with her recent groundbreaking work on ALS epidemiology demonstrate her immense merit as a recipient of this prestigious award. An exceptional ALS physician, Dr. Feldman has been listed in Best Doctors of America for 20 consecutive years. 

ALS is a rapidly progressive, ultimately fatal neurological disease that attacks the nerve cells responsible for controlling voluntary muscles. It currently has no cure. Dr. Feldman’s research is contributing to a more hopeful outlook for the approximately 20,000 people diagnosed with this disease. 

We are thrilled to honor Dr. Feldman’s continued work on the development of new treatments for ALS, along with her commitment to the care of people living with ALS, her considerable generosity as a collaborative researcher, and her enthusiasm and support as a mentor to many younger ALS researchers. As one of the most distinguished neurologists of her time, Dr. Feldman’s work shows that with research, better treatment strategies for brain disease are possible.

Support advancements in research for brain disease

Our annual Commitment to Cures Fundraising Gala takes place in Denver on April 13. If you’d like to further champion the vital efforts of researchers, including our esteemed award recipients, consider making a donation. With the support of people like you, your friends, your family, and beyond, we can raise awareness and essential funding for the research that will one day make life without brain disease more than just a vision for the future.

Few diagnoses carry the weight and fear that come with an incurable brain disease. It’s a moment that shatters lives and sets off a whirlwind of questions, fears, and uncertainty. The emotional impact extends far beyond the individual receiving the diagnosis, affecting family members, friends, and caregivers. An estimated 48 million individuals currently care for adult family members or friends, navigating the uncertainty, shock, and hopelessness alongside them.

In this blog we go beyond the considerable physical and financial costs of brain disease to understand the emotional toll that brain disease has on individuals and their loved ones. We hope these stories from our community members highlight the reality of life with brain disease and demonstrate patients’ and caregivers’ incredible strength in the face of adversity.

Navigating Isolation After A Diagnosis

Julie Turner was 54 when she learned she had cerebral small vessel disease (CSVD). CSVD can lead to a variety of symptoms in later stages, including cognitive impairment, and issues with walking and balance. Eventually, Julie’s condition worsened and she was forced to quit her job, ending a 40-year career she loved. To add to her isolation, she noticed that the challenges CSVD created were pushing some loved ones away. This isolation resulted in more difficulties navigating daily life and care, and also worsening depression. Julie’s experience is unfortunately all too common for people experiencing chronic illness, highlighting the importance of caregivers and support groups. 

Relearning Basic Skills to Reclaim Her Identity

Genevieve Bahrenburg experienced two TBIs that changed life as she had known it. Not only did she undergo a total of 13 brain and skull surgeries over the years to compensate for the skull damage, but she also suffered aphasia and had to relearn how to walk, speak, and read. For Genevieve, parts of her identity once taken for granted became monumental challenges. For instance, the art lover and Vogue and Elle editor suddenly had to teach herself to read again. Genevieve would visit museums and libraries to relearn the names and works of her favorite artists. Reclaiming that part of her identity was just one step on a long recovery journey. Genevieve tells her story to shine a light on the recovery process. 

Finding A Purpose Through Powerlessness

Living with a brain disease that doesn’t have a treatment or cure can plunge patients into a cycle of hopelessness. Ruth Hochheiser’s ongoing journey with orthostatic tremor (OT), a rare movement disorder, shows the emotional toll of living with a progressive disease with no cure. When it comes to accepting the new limitations and challenges that come with not being able to stand, some days are better than others. “It creates a feeling of isolation, a feeling of powerlessness, a feeling that I have no control,” Ruth says. To help regain a sense of control, she meditates daily and works with health care organizations and researchers to advocate for OT.

The Emotional Toll of Brain Diseases on Caregivers

Brain diseases not only affect the individual diagnosed but also create a ripple effect of emotional strain for their families and caregivers.

Mary Jo M. still remembers where she was when she learned that her mom was diagnosed with dementia and Alzheimer’s. Her father had just been diagnosed with diabetic neuropathy and was working through the complications of a stroke and traumatic brain injury. 

“I had a choice at that point to either stay in New York and continue to work… or to come back to Chicago and be with my family,” Mary Jo says.

She remembers being unsure what to do, stressed beyond belief, and afraid of the future. Like many loved ones, she had more questions than answers: Who’s going to be the power of attorney? Are they allowed to make decisions anymore for themselves? Who’s going to make sure that my mom doesn’t walk out of the house in the middle of the night? Who’s going to make sure that my dad doesn’t fall?

She took six months off work to consider her options, but ultimately moved home and became her parents’ caregiver, coordinating closely with a personal family caregiving team and multiple therapists.

Mary Jo’s life is nothing like before, but the most devastating thing is losing her mother’s friendship and watching her unable to do the things she once loved. “It hurts when I have friends who have so many great things that they do with their mothers… and I can’t,” she says, “I’m just trying to keep her alive.”

Too many people know firsthand the emotional burden of brain disease, whether it’s watching a loved one slowly slip away or progressively losing the ability to do things that you once did with ease. The American Brain Foundation envisions a world without brain disease and is committed to funding innovative research to get us there. 

The American Brain Foundation is committed to finding cures for brain diseases. Donate today to make a difference. With your help, we won’t have to imagine a world without brain disease, we’ll be able to live in one.

Learn about how neuroinflammation is linked to multiple sclerosis and why it is the focus in our new research initiative.

Did you know that inflammation across the entire central nervous system plays a major role in many brain diseases, including multiple sclerosis (MS)? Neuroinflammation — swelling in the brain and spinal cord — is involved in everything from the nerve damage that causes MS to the worsening of symptoms over time.

For people with MS, neuroinflammation plays a significant role in the demyelination process — the process where the protective coating around nerves (myelin) breaks down and causes the movement symptoms of MS.

Because of neuroinflammation’s connection to nearly every brain disease and many bodily processes, the American Brain Foundation has launched a new research initiative in partnership with a number of disease-specific research and patient advocacy organizations, including the National MS Society. The initiative aims to better understand neuroinflammation as an underlying mechanism of brain disease and brain health.

What Is 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. This inflammation can be a protective response, but in the case of many brain diseases, it is the result of a faulty autoimmune response that causes damage to the brain and nervous system. 

Research shows that prolonged or excessive inflammation may be a key driver in the onset and progression of several neurologic diseases and disorders, including MS. In people with MS, nerve damage takes place in the brain and can extend to the rest of the central nervous system. Treating inflammation is important because it may have an impact on a person’s symptoms and disease progression.

Is MS Caused by Inflammation in the Brain?

Not exactly. MS is believed to be an autoimmune disease, in which the body’s immune system attacks its own tissues. The disease affects 2.5 million people worldwide and about 1 million Americans, and as many as 10,000 new cases are diagnosed each year. It is a chronic disease with unpredictable attacks.

While inflammation is part of the autoimmune response linked to the disease, scientists don’t know exactly what causes MS. While there is evidence that the Epstein-Barr virus is associated with an increased risk of MS, scientists still don’t know for sure whether certain viruses can trigger the disease, how to prevent it, what predicts the course of the disease, or when an attack will happen.

What they do know is that people with MS experience inflammation in the brain and spinal cord, and this inflammation contributes to demyelination — damage to myelin, the protective coating around nerves.

Microglia (immune cells in the central nervous system) are often present at sites of demyelination. Research now shows these immune cells may play an active role in the process of demyelination in MS. Activated microglia can contribute to neuroinflammation by releasing substances that affect surrounding cells.

When demyelination occurs, it disrupts communication between the brain and other parts of the body. This interruption is what causes the symptoms of MS, such as muscle weakness, fatigue, and balance problems. People with MS often experience distinct attacks, where symptoms get worse and then subside, which creates unpredictability for those living with this brain disease.

Over time, high levels of neuroinflammation may accelerate brain aging and contribute to the progression of brain disease, drawing a connection between neuroinflammation and neurodegeneration.

Treating Nervous System Inflammation May Reduce MS Symptoms

Scientists have established links between an autoimmune response, neuroinflammation, demyelination, and neurodegeneration. More research will clarify exactly how these factors are connected and how targeting them can lead to better treatments for MS.

“MS, we think, is an autoimmune disease, and we have a number of autoimmune diseases,” says Raymond Roos, MD, previous member of the Foundation’s research advisory committee and the Director of the Amyotrophic Lateral Sclerosis clinic and the Marjorie and Robert E. Straus Professor in Neurological Science. “I think if we understand MS, it will bring us closer to understanding many autoimmune and neuroinflammatory diseases.”

Understanding neuroinflammation better can help researchers and doctors know where, when, and how to increase or decrease inflammation within the central nervous system. Regulating inflammation could improve treatments for many different brain diseases, including MS.

While there is no cure for MS, researchers are exploring how to reduce the immune response that triggers neuroinflammation as a way to improve symptoms and slow the disease’s progression. A recent study identified an immune system regulator in the gut microbiome that may contribute to the autoimmune response and inflammation that are characteristics of MS. By targeting neuroinflammation, researchers hope to make early interventions that prevent or slow damage to the nerves in the first place.

The topic of neuroinflammation is central to the American Brain Foundation’s 2025 Cure One Cure Many Award. Our new neuroinflammation initiative provides funding to the world’s top researchers to pursue innovative approaches to brain disease diagnosis and treatment. With its unprecedented, cross-industry collaboration, this research initiative promises to transform the future of brain health.

The American Brain Foundation is committed to funding research for MS and other neurodegenerative diseases. That’s because finding a cure for one brain disease will lead to cures for many others. Join us in our fight against brain disease—donate today to fund life-changing research.

Learn how the latest ALS research has led to groundbreaking treatments that slow this brain disease and may soon be able to prevent it.

The latest ALS clinical trials have produced major advancements in its treatment and have even impacted therapeutics for other neurodegenerative diseases, like Alzheimer’s and Parkinson’s. Board Chair David Dodick, MD, FAAN, hosted a recent webinar with Foundation Board Member Merit Cudkowicz, MD, MSc, one of the world’s foremost experts on ALS. 

Dr. Cudkowicz discusses promising new research, breakthroughs about the underlying biology of ALS, and recent advances in treatment that provide hope for people with ALS and their loved ones. She also explains how these advancements have a ripple effect on the larger field of brain disease research.

What is ALS, and Who is Affected by It?

ALS stands for amyotrophic lateral sclerosis. A rapidly progressing neurodegenerative disease, ALS causes damage to the nerve cells in the brain and spinal cord that control voluntary muscle movement. When these nerve cells (called motor neurons) decline, they stop sending signals to the muscles. This makes the muscles twitch, weaken, and atrophy (lose mass and deteriorate). ALS is a rapidly progressing disease with an average life expectancy of two to five years.

While ALS most commonly affects people between the ages of 40 and 70, Dr. Cudkowicz notes that younger and older people can develop the disease. According to the National Institutes of Health, men are slightly more likely to develop the disease than women—though this difference is reduced as age increases. ALS is considered a rare disease, affecting about five in 100,000 people. “There are about 30,000 people in the United States living with ALS and more than 400,000 globally,” explains Dr. Cudkowicz.

What Causes ALS?

Understanding what causes ALS is the subject of much ongoing research about the disease. “We know that between 10 and 20% of people have a known change in their DNA, what we call genetic mutation, that causes the illness,” says Dr. Cudkowicz. Scientists have identified more than a dozen genetic mutations that can be inherited from a parent and cause the hereditary form of ALS. 

However, the majority of people with the disease have sporadic ALS, meaning it happens without a clear cause or family history of the disease. Researchers believe that this form of ALS is caused by genetic risk factors combined with environmental factors. More research is needed to better understand the development and progression of sporadic ALS.

Exciting Advancements in Treating ALS

A few decades ago, there was only one drug treatment option for ALS. Today, there are three marketed drugs that work for all forms of ALS to slow down disease progression: Riluzole, Radicava, and Relyvrio. The most recently approved drug, Relyvrio, is particularly promising. A combination of two different existing drugs, it works synergistically to target multiple issues caused by ALS. “The combination of these two drugs slowed the loss of function by 25% and also had an effect on longevity,” she says.

Another promising treatment is the gene therapy tofersen (marketed as Qalsody®), which was developed for people with a specific type of hereditary ALS. “This is a treatment that can block the mutation in the gene from making the misfolded or mismade protein called SOD1,” explains Dr. Cudkowicz. The global study showed that the drug slowed disease progression for everyone in the trial. Amazingly, 40% of participants got better and showed improvement in their strength. Researchers are working to understand why the other 60% did not have that improvement, but the findings are still exciting. “This is a huge step forward for ALS,” says Dr. Cudkowicz.

The same study revealed promising news about using biomarkers (biological indicators) with ALS. Researchers used a blood test to measure damage to the nerves. At 12 weeks of treatment, the test showed a 50% decrease in the appearance of an indicator of neurodegeneration called neurofilament. Equally as important, the biomarker also predicted clinical response. “This is a game changer for ALS because that means that there can be possibly a shorter way to screen drugs using this blood test, rather than perhaps needing longer studies looking at clinical outcomes,” explains Dr. Cudkowicz.

Innovative Trials for New ALS Treatments

While ALS studies were difficult to come by in the past, many are now taking place worldwide. Dr. Cudkowicz notes that, at the time of the webinar, there are currently more than 27 late-stage trials. If those trials are positive, the studied treatments could soon be available to the public.

Innovations in how clinical trials are conducted are also expediting the advancement of new treatments. Historically, drugs are tested one at a time, but this is not the most efficient method when there is a long list of them to study. ALS researchers decided to use platform trials, a successful concept used in cancer clinical trials that need to evaluate many different drugs. A platform trial tests multiple drugs in the same infrastructure, adding and removing drugs until researchers find what works. 

Another benefit of platform trials is that the data from a single placebo group can be used for multiple drugs. “This is a way to really cut down the time of drug development in half, cut the costs, and really increase the number of people getting the active drug,” says Dr. Cudkowicz.

How ALS Research Impacts the Larger Field of Brain Disease

ALS research benefits not only those with the disease but also people with other neurodegenerative conditions. Insights from ALS trials are already being applied to several other brain diseases. “The Michael J. Fox Foundation and some of the Parkinson’s researchers came to visit us to learn about platform trials, and they’re now launching a platform trial in Parkinson’s,” explains Dr. Cudkowicz. 

Researchers studying stroke and Alzheimer’s disease are also following suit. “We’re also sharing a lot of the science because some of the biology is overlapping between these diseases,” says Dr. Cudkowicz. This underscores the American Brain Foundation’s philosophy of Cure One, Cure Many: Many brain diseases are interconnected, so a breakthrough for one will lead to advancements for countless more.

Why More Brain Disease Research is Critical

The field of neurology is making progress every day, but there is still much more work to be done. “Ultimately, we want to be able to say we have treatments that stop [people’s] illness. And that’s where the research is so important in attracting young new investigators to the field,” explains Dr. Cudkowicz. She is optimistic about the future of treating ALS and other neurodegenerative diseases. “This is the first time in my career where I’ve seen a drug not only work but actually halt the illness,” she says. “That tells us it’s possible, it’s possible to cure this illness, the more you understand the cause.”

The American Brain Foundation is committed to funding research for ALS and other neurodegenerative diseases. That’s because finding a cure for one brain disease will lead to cures for many others. Join us in our fight against brain disease—donate today to fund life-changing research.

Why neurodisparities exist in research and methods to overcome them for more equitable brain disease research

Systemic bias within medical research can result in certain groups being treated unfairly or underrepresented in studies, primarily due to factors such as race or socioeconomic status. It is important to note that bias does not always stem from intentional discrimination but is often embedded in the study design and approach to sample populations and data collection. No matter the reason, these biases lead to research findings that do not accurately reflect the larger population, ultimately perpetuating unequal access to healthcare and treatments.

Dominique Popescu, PhD, a research fellow at Massachusetts General Hospital, is the recipient of the American Brain Foundation’s 2023 Next Generation Research Grant in Neurodisparities. We sat down with Dr. Popescu for an insightful conversation about how neurodisparities impact research, how to consider past research methodologies and methods to reduce these disparities in future studies.

Neurodisparities in the Research Itself

Neurodisparities refer to the differences in brain disease diagnosis and care that exist among various social, economic, and racial groups, with a tendency to disproportionately disadvantage people of color. “Neurodisparities largely reflect historical and contemporary population differences in experiencing racism, whether it’s interpersonal racism or structural,” said Dr. Popescu. 

This acknowledgment is crucial because it challenges the common tendency to attribute disparities solely to genetic factors or individual behaviors. By recognizing the influence of racism, we can avoid assigning blame to the victim. For example, rather than assume an individual’s health worsened because they chose not to see a neurologist, we should consider other factors out of their control that might prevent them from seeing one: perhaps they don’t live near a neurologist that speaks their first language.

Why do Neurodisparities Occur In Research?

Neurodisparities in research can be attributed to structural factors that contribute to the exclusion of certain populations from participating. For example, individuals in rural areas might find it especially difficult or time-consuming to access research centers and engage in studies that are far away from where they live.

Language barriers also play a significant role, as some patients may struggle to effectively communicate with neurologists and researchers due to differences in language or healthcare literacy. One study conducted by the Alzheimer’s Association found Hispanic Americans are significantly underrepresented in Alzheimer’s clinical trials due to perceived medical bias and socioeconomic factors. For example, Hispanic Americans were more likely to be unable to miss work to participate in studies.

Dr. Popescu notes that a lack of diversity in the academic community also affects research outcomes. “Black Americans are underrepresented in neurologic research, but also in academic leadership positions,” she said, pointing out that there might not be a single Black person involved in a research project, from study design all the way to participant recruitment. “Having a lack of representation at every single step along the way results in a lack of inclusion. It’s exclusionary from the beginning,” she said.

How to Reduce Disparities in Research

The existence of bias doesn’t mean that we need to throw away decades of traditional research. Instead, we can change the lenses we use to interpret past research and embrace new methods as we move forward. 

Acknowledging Disparities and Bias

Dr. Popescu views acknowledgement as the first step in reducing disparities in research. For example, we can dismantle the idea of “colorblindness,” or treating all races and ethnicities the same, in research. She also underscores the significance of using an anti-racist framework when designing and interpreting research studies to address explicit bias and implicit or unconscious bias. For example, when reviewing older literature she always asks herself, ‘Who was in the study? Who are the findings most likely to help?’ Dr. Popescu believes that by adopting an anti-racist approach, researchers can challenge the status quo, dismantle discriminatory practices, and promote equity in brain disease research.

Community-Based Participatory Research

Community-Based Participatory Research (CBPR) is an approach that aims to improve the engagement of underrepresented populations in medical research. Unlike the traditional research approach, in which the researcher develops the idea and then reaches out to the community, CBPR flips the model by involving the community from the very beginning.

“It’s an approach that can help overcome a lot of the mismatches between researchers’ goals and methods and the needs of the community, and of course, other marginalized groups,” said Dr. Popescu. CBPR creates an opportunity for community members to participate in the development of interventions and implementation strategies, increasing the relevance and impact of research efforts. Moreover, this approach fosters a shared responsibility and improves the relationship between researchers and the population they aim to assist.

Studying Neurodisparities Themselves 

It’s vital to support research that examines disparities in healthcare and methods to overcome the barriers. In the Autism Spectrum Disorder (ASD) space, Latino children are consistently diagnosed at older ages than their white peers, partly due to the lack of language-appropriate and culturally relevant diagnostic tools. In 2022, Audrey Brumback, MD, PhD, was awarded an American Brain Foundation Next Generation Research Grant to study a new diagnostic tool developed for this population. The Criteria Diagnostic Interview (CRIDI-ASD/DSM-5) was developed in Latin America as a culturally relevant and language-appropriate tool for ASD diagnosis. If validated in the United States, CRIDI has the potential to become a widely used assessment tool for clinicians to diagnose ASD in Latino children.

This study demonstrates the importance of identifying disparities, understanding their underlying causes, and working towards solutions that promote equity and improve outcomes for marginalized populations.

By acknowledging bias and adopting anti-racist frameworks, the scientific community has the opportunity to transform the research process and make it more equitable. An essential part of the American Brain Foundation’s core values is championing equity in brain disease research; we award an annual Next Generation Research Grant in neurodisparities to a project designed to improve how we understand and address health disparities. It is only through this inclusive approach that we will move closer to our vision of life without brain disease — for everyone.

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.

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.