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

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

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

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

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

Commitment to Cures 2023

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

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

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

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

13 Next Generation Research Grants (NGRG) Awarded

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

Support That Will Have a Lasting Impact 

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

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

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

Education and Empowerment

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

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

Thank You to Our Supporters

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

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

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

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

 

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

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

1. Many Small Contributions Help Form a Bigger Picture

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

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

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

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

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

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

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

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

Building a Legacy of Support

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

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

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

How You Can Help 

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

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

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

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

 

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

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

 

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

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

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

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

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

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

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

Evaluating Current AI Models for 14 Characteristics of Consciousness 

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

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

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

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

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

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

Brain Imaging and Mapping

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

Neuromodulation Devices

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

Diagnosis

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

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

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

 

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

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

 

At the American Brain Foundation, our philosophy of Cure One, Cure Many drives our efforts to support clinician-scientists working across different research areas. We believe that supporting early-career investigators is an investment in the brain disease treatments and cures of the future. Our Next Generation Research Grants are offered in partnership with the American Academy of Neurology in order to fund early-career researchers pursuing innovative research projects across the whole spectrum of brain diseases and disorders. 

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

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

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

Why were you inspired to study the brain?

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

What specific issue is your research trying to address? 

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

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

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

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

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

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

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

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

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

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

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

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

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

Why is it so important to fund research?

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

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

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

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

 

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

Gene Therapy Advancements for ALS

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

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

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

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

A Promising New ALS Drug

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

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

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

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

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

Side Effects and Treating Other Forms of ALS

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

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

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

How ALS Research Impacts Other Brain Diseases

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

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

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

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

The Importance of Gene Therapy on Future Brain Disease Research

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

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

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

 

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

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

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

An Innovative New Study With Exciting Results

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

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

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

Unlocking How the Brain Processes Music and Sound

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

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

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

Promising New Applications for Brain-Controlled Prosthetics

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

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

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

Why Brain Research Is Crucial

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

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

 

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

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

 

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

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

Why Research Neuroinflammation?

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

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

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

Connections Between Neuroinflammation and Brain Disease

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

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

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

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

Bringing Researchers Together to Cure Brain Disease

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

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

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

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

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

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

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

 

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

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

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

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

Becoming a Caretaker for Someone With Parkinson’s Disease

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

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

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

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

Receiving a Parkinson’s Disease Diagnosis

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

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

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

Finding Effective Treatments for Parkinson’s Disease

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

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

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

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

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

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

Critical Parkinson’s Research and New Discoveries 

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

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

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

The Benefits of Support and Education

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

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

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

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

Disparities in Care and Advocating for Equity in Brain Health

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

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

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

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

Hope for People Living With Parkinson’s Disease 

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

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

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

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

 

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

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

 

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

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

The Effects of Traumatic Brain Injury

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

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

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

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

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

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

Common Causes of Brain Injury

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

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

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

Current Research on Traumatic Brain Injury

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

Next Generation Research Grant Study on TBI Complications

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

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

Advancements in Diagnosis, Recovery, and Post-TBI Care

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

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

Connections Between TBI and Other Brain Diseases

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

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

 

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

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

 

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

Launching Careers of the Next Generation of Brain Disease Researchers

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

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

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

Marina Avetisyan, MD, PhD

Disease Area: ALS

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

Maurizio Grassano, MD

Disease Area: ALS

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

Eva Klinman, MD, PhD

Disease Area: Cognitive Aging and Age-Related Memory Loss

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

Sheena Baratono, MD, PhD

Disease Area: Cognitive Aging and Age-Related Memory Loss

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

Wesley Kerr, MD, PhD

Disease Area: Epilepsy

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

Tanav Popli, MD

Disease Area: FTD

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

Patricia Olson, MD

Disease Area: Migraine

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

Danwei Wu, MD

Disease Area: Multiple Sclerosis

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

Dominique Popescu, PhD

Disease Area: Neurodisparities

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

Natalie Katz, MD, PhD

Disease Area: Neuromuscular Disease

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

Robert Heuermann, MD, PhD

Disease Area: Parkinson’s Disease

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

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

Erika Williams, MD, PhD

Disease Area: Peripheral Neuropathy

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

Paula Barreras, MD

Disease Area: Peripheral Neuropathy

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

Margy McCullough-Hicks, MD

Disease Area: Stroke

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

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

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

 

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

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

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

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

What Is Autism?

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

How Do We Diagnose Autism?

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

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

Why Is an Early Autism Diagnosis Important?

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

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

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

Disparities in Autism Diagnosis Criteria

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

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

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

Barriers to Early ASD Diagnosis for Latino Children

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

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

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

How Research Is Bridging the Gap for a Better Future

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

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

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

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

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

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

 

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

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

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

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

What Is Spinal Muscular Atrophy?

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

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

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

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

Are Any Types of SMA Treatable?

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

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

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

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

How Advancements in SMA Treatment Are Fueling Other Neuromuscular Disease Research

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

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

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

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

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

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

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

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

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

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

Changing Terminology Around Dementia

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

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

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

Blood Tests for Alzheimer’s Disease

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

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

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

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

New Alzheimer’s Drug Treatment Options

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

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

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

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

Aducanumab

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

Lecanemab

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

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

Donanemab

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

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

Donanemab is still awaiting full FDA approval.

Drawbacks to Alzheimer’s Disease Drugs

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

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

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

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

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

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

A Hopeful Future for Dementia Treatment

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

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

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

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

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

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

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

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

Brain Disease and Disability

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

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

Disparities in Neurologic Care

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

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

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

How Brain Disease Causes and Contributes to Disability

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

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

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

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

The Importance of Research

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

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

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

 

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

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

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

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

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

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

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

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

Watch the trailer for This Hits Home.

From Conversation to Film: The Making of This Hits Home

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

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

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

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

The Silent Epidemic of DV-TBI

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

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

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

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

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

How Domestic Violence Affects the Brain: TBI and CTE

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

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

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

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

The Importance of Research and Advocacy

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

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

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

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

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

You can watch This Hits Home today by clicking here.

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

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

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

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

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

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

What is the alpha-synuclein protein?

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

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

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

How does the new tool work?

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

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

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

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

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

The Benefits of Early Diagnosis and Treatment

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

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

The Importance of Research

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

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

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

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

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

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

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

What Is Orthostatic Tremor?

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

Appearance and Progression of Symptoms

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

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

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

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

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

Treatment and Medications for Orthostatic Tremor

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

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

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

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

The Physical and Emotional Toll of OT

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

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

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

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

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

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

Spreading Awareness and Inspiring Research

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

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

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

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

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

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

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

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

Why Is it So Important to Fund Brain Disease Research?

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

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

Signs of Progress in Alzheimer’s Research

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

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

Recent Breakthroughs in Alzheimer’s Research

Treatment

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

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

Early Intervention

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

Diagnosis and Detection

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

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

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

Current Research Funded by the American Brain Foundation

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What Are Health Disparities in Brain Health?

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

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

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

Bias Around Mental Illness Can Make Brain Disease Harder to Diagnose

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

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

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

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

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

Stigma in Mental Health Care

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

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

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

How Research Can Reduce Disparities in Neurologic Care

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

We know that research will lead to better diagnosis and treatments for all brain diseases, including a deeper understanding of the relationship between brain disease and mental illness. Learning more about the connections and overlapping symptoms between brain diseases and mental illness will help fight bias and enable doctors to make more accurate diagnoses. With your support, we can reduce the health disparities in neurology due to mental illness.

 

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

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

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

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

What Is Wearable Technology?

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

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

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

What Are the Medical Applications of Wearable Technology?

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

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

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

How Does Wearable Technology Help Treat Brain Disease?

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

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

Wearable Technology for Epilepsy

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

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

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

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

Wearables for Hearing Loss and Tinnitus

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

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

Future Applications for Wearable Technology

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

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

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

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

 

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

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

What Is Disease Burden?

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

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

The Challenges of Disability

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

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

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

The Financial Costs and Economic Burden of Brain Disease

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

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

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

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

The Emotional Toll on Loved Ones

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

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

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

The Social Inequities of Brain Disease

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

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

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

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

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

 

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

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

What does equity have to do with global brain health?

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

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

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

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

How do modifiable risk factors affect dementia?

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

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

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

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

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

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

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

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

Why Funding Research Is So Important to Global Brain Health

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

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

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

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

 

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

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

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

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

Arianna Huffington: Public Leadership in Neurology Award

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

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

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

Peter Frampton: Ambassador Award

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

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

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

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

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

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

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

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

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

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

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

Virginia Lee, PhD: Sheila Essey Award for ALS Research

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

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

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

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

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

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

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

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

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

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

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