An American Brain Foundation board member outlines his path from a rare brain disease diagnosis to advocacy

Ben LeNail was perfectly healthy until age 40. He lived in Palo Alto, California, raising a family. He loved to explore the natural wonders of Northern California by running, skiing, white water rafting, hiking and mountain climbing.

And then something changed.

Ben, who used to run eight miles with friends, suddenly could barely manage to run a single mile. “There was a heaviness, a lack of stride, and eventually I also started stumbling, which is really another telltale sign that there is almost an electrical short in your body, in your spine specifically,” he says.

He initially ignored the signs, thinking he was just getting old. “What happened to me is very typical of the start of a neurological disease,” Ben says. “The symptoms are kind of small to begin with, and very, very hard to pinpoint to a specific cause.”

But then his wife told him he was “walking funny” and dragging his feet. So she signed him up with a physical therapist. The therapist gave him a reflex test and told him there was nothing wrong with his muscles. But he likely had a neurological condition.

That revelation began Ben’s journey with a rare brain disease. It was a winding path from a two-year search for a diagnosis of X-linked adrenoleukodystrophy to becoming an advocate. It even led to him setting up a foundation and becoming a part of the American Brain Foundation.

In Search of a Diagnosis

Getting a certain diagnosis was anything but easy. His doctors hit a dead end after ruling out the usual suspects, including ALS, MS and Parkinson’s. Eventually, they told him to come back in six months when his symptoms got worse. Then they might have more success.

“The reality is that you hit those dead ends, and then you go home and you sulk,” he says. “You’re like, I have something, I will never know its name, it may kill me, and it sucks.”

After many more tests, Ben finally had a name: X-linked adrenoleukodystrophy. This genetic disease, primarily seen in young males, affects the nervous system by reducing the ability of the nerves to relay messages to the brain. It also causes a shortage of certain hormones, which can cause weakness, weight loss and vomiting.

In Search of Information

After the shock wore off, Ben jumped into education mode and researched as much as he could. He found out the lead author for a lot of the papers was based in France, where Ben came from. He reached out.

“A very, very wonderful trait in many rare disease communities is people are very chummy, very generous with their time, so I got an answer right away from an eminent clinician in Paris, even though I wasn’t even his patient,” says Ben. “He educated me, and then he said, ‘We have a patient meetup in Paris at the end of March.’”

That meetup in 2012 was Ben’s first immersion in the community. When he first saw kids in wheelchairs with feeding tubes and breathing apparatuses, he felt he didn’t belong here. But he changed his mind, and thought, “I actually do belong here. That’s my new tribe, and I have to make friends, I have to talk to people, I have to hear their stories.”

Becoming an Advocate

Ben says the conference in Paris was a profound experience, and inspired him to start a similar foundation, called ALD Connect, in the U.S. in 2013. “I wanted to get educated on the disease and the field, the general field of neurology and rare disease, and then once I felt I had built a lot of know-how, I wanted to share that,” he says.

One of the goals of the foundation is to encourage the pharmaceutical industry to pursue treatment. It does this by showing companies that patients with X-linked adrenoleukodystrophy are organized and hungry for treatment. Having things like a patient registry makes it easier for researchers to create a cohort of patients for clinical trials.

Even so, progress moves slowly, Ben says. When he started the foundation, a company in Massachusetts was in the middle of a phase-two study on a possibly life-saving gene therapy for kids. It took them years to get to that point. Eight years later, the therapy is close to being available to patients. “Some of the foundational intellectual property came out of France literally around 2005, and the therapy is very likely to be approved and commercialized in 2021,” Ben says.

For Ben, the decision to become an advocate came from his desire to connect with others. He also wanted to be a leader. “You can find incredible fellowship and support and solidarity in that community, and so I wanted to not only be part of it, but be a leader in it, a go-to person, a guru, a mentor to people who just got diagnosed and are feeling hopeless and lost and totally crushed,” he says.

Last year, Ben joined the board of the American Brain Foundation to further his impact. “One thing that’s been definitely tugging at me for a long time is scaling beyond rare disease and specifically beyond X-linked adrenoleukodystrophy and understanding some of the fundamental patterns of neurological disease, neural degeneration,” he says.

Ben felt moved by the Foundation’s pursuit of a life without brain disease. “It’s really a very bold and ambitious approach of saying, ‘How can we live a life that is free of these crippling diseases, like multiple sclerosis, stroke, epilepsy that have terrible consequences for quality of life’,” he says.

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

Meet the new grant recipients and learn about their innovative research projects

 

The American Brain Foundation’s Next Generation Research Grants fund and support innovative investigations by the best and brightest early-career researchers. Funding research across a broad spectrum of the brain and nervous system is our best hope for finding better treatments, prevention, and cures for brain diseases and disorders. With the support of our donors, we’re helping to launch long-term careers for the next generation of clinical neuroscience researchers so that one day we can all enjoy life without brain disease.

Impact of Next Generation Research Grants

Stats about the impact of Next Generation Research Grants

Welcome to the 2021 Class

Jonathan Brent, MD, PhD, ALS

Jonathan Brent, MD, PhD

ALS

Mutations in KIF5A, a type of motor protein, have been identified in patients with ALS. Dr. Brent will study how these motor proteins function in neurons, and how and why mutations in these proteins may cause ALS. His research has the potential to impact how ALS is identified and treated, leading to improved treatments and quality of life for people with this incurable disease.

Helen Hwang, MD, PhD, Parkinson's disease

Helen Hwang, MD, PhD

Parkinson’s Disease

By using innovative imaging techniques, Dr. Hwang intends to analyze cerebrospinal fluid to identify biomarkers for Parkinson’s. New biomarkers may aid in early diagnosis and monitoring, as well as the development of new therapeutics.

Paul Sampognaro, MD, ALS

Paul Sampognaro, MD

ALS

Dr. Sampognaro’s research will help to clarify the disease mechanism of ALS and identify new therapeutic targets for treatment.

Ikjae Lee, MD, ALS

Ikjae Lee, MD

ALS

Dr. Lee’s project will seek to identify lipidome biomarkers that are associated with faster disease progression, and will examine whether serum lipidome and lipoprotein composition are significant predictors of ALS. This research could point to metabolic alterations and nutritional deficits that could help to explain why ALS progresses more quickly in some patients.

Samuel Terman, MD, Epilepsy

Samuel Terman, MD

Epilepsy

Dr. Terman will study the effect of anti-seizure medications discontinuation on seizure relapse risk and create an individualized risk calculator of seizure relapse for both discontinuation and continuation of anti-seizure medications. This research will help doctors and patients make better treatment decisions by estimating the risks and benefits of discontinuing anti-seizure medications.

Wai-Ying Wendy Yau, MD, Cognitive Aging

Wai-Ying Wendy Yau, MD

Cognitive Aging

The goal of Dr. Yau’s research is to discover the connections between early vascular risk and white matter injury. By identifying biomarkers in the white matter, Dr. Yau hopes to connect these indicators to higher vascular risk in order to slow the rate of cognitive decline and promote healthier brain aging.

Alexander Gill, MD, PhD, Multiple Sclerosis

Alexander Gill, MD, PhD

Multiple Sclerosis

Dr. Gill’s research will study NLRX1, a protein that plays a role in the immune system. Recent studies have shown a correlation between the loss of NLRX1 and an increase in neuroinflammation.

Renata Knox, MD, PhD, Neuromuscular Disease

Renatta Knox, MD, PhD

Neuromuscular Disease

Dr. Knox will study the DUX-4 protein as a potential cause of Facioscapulohumeral muscular dystrophy and will examine gene modification therapy to potentially block the DUX-4 protein from being released.

Reem Waziry, MBBCh, MPH, PhD

Cognitive Aging

Dr. Waziry will develop biological age measurements assessed through a routine blood test to study whether biological age can help predict cognitive outcomes for stroke survivors. This project will also help researchers learn more about racial disparities in stroke risk and outcomes.

Learn more about our researchers.

 

Thank you to our partners for making the Next Generation Research Grants possible

The American Brain Foundation works with the most respected organizations working to defeat specific diseases of the brain and nervous system. Together, we can outsmart brain disease.

Our Research Partners

American Academy of Neurology – Our Founder & Research Partner

The ALS Association

Alzheimer’s Association

American Epilepsy Society

American Heart Association

CReATe Consortium

Epilepsy Foundation

The Mary E. Groff Charitable Trust

McKnight Brain Research Foundation

Muscle Study Group

Myasthenia Gravis Foundation of America

National Multiple Sclerosis Society

Parkinson’s Foundation

Society of Vascular and Interventional Neurology

Tourette Association of America

 

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.

Debra Meyerson was a tenured Stanford University professor and happily married with three teenage children. She was active and fit. But then a severe stroke nearly killed her and left her with a paralyzed right side and no speech.

After her stroke, Debra focused almost completely on rehabilitation therapy for three years. She was desperate to get back to who she was. Eventually she made a lot of progress. But Debra still walked with a limp, had no function in her right arm, and, most devastatingly, had limited speech. 

At the end of her medical leave at work, she had to give up her tenured position at Stanford. This was another blow—a “second trauma” to life as she knew it. 

Debra’s life forever changed. Not only was her body different but her identity as a professor was gone as well. Debra now had to not just fight to recover more of her physical abilities. She also had to embrace her new identity as a stroke survivor. Finally, she needed to build a new life consistent with her new capabilities.

The need for emotional resources

Through her experience, Debra found there was a major gap in emotional resources for stroke survivors. This includes the often painful but crucial work required to consciously and deliberately rebuild one’s identity and life. 

A large tool in this process for Debra came through authoring a book with the help of her family. She began to write the book to “prove she could.” As a scholar, writing was a large part of her pre-stroke identity and something she was trying to hold onto. “When I started diving into the topic of identities—one that I studied and researched as an academic—I realized I needed to turn that lens on my own journey,” she says. “I needed to really look at how my identities were changing.”

Part of that journey was recognizing that no matter how hard she worked, she would most likely be living with some degree of disability for the rest of her life. Writing the book helped her through the emotional journey. She began to view the book as a way to help others and find a new purpose. “That was another key discovery: how important it is to have purpose and how that could help me rebuild a rewarding life,” she says.

Debra’s book, “Identity Theft: Rediscovering Ourselves After Stroke,” aims to assure survivors and caregivers that they are not alone in their physical and emotional journeys post-stroke. Through the book and Stroke Onward, the nonprofit she and her husband created, she hopes to collaborate with others to raise awareness mostly for the emotional aspect of stroke. “When acute brain disease such as stroke occurs, it can immediately change your life and the identities that you and your family previously had lived,” she says. “We are focusing the efforts of Stroke Onward on the emotional journey to rebuild rewarding lives because too little is happening in this space.”

Even though Debra recognizes that each person’s recovery looks different, she does believe there are some universal truths. 

  1. Work hard on your recovery: You can keep improving even 10 years or more after your stroke. 
  2. Celebrate the small wins: Recovery may seem overwhelming at first, but step by step, it adds up.
  3. Advocate for yourself: You can recruit family and friends to be your advocates as well. 
  4. Look forward not back: But still, give yourself the space to grieve what you have lost. It’s important to honor those feelings. 
  5. Find the deeper meaning in what you used to do but can’t anymore: Debra used to love running. Now, she finds pleasure in walking and hiking. Debra enjoyed being a professor. Now she looks to contribute via her organization, Stroke Onward.
  6. Ask for help: This doesn’t just apply to things you can’t physically do but also in processing the emotional journey. 

 

Debra’s lives as a wife, mother, daughter, sister, and person who loves to exercise and play sports still exist. “I think I still have the same values and many of the same personal characteristics that are part of my identity: I’m still determined, willful and independent,” she says. “The biggest change is that now my identities also include stroke-survivor and person with disabilities.” Debra hopes to continue to share her story and advocate for the emotional needs and resources for stroke survivors and their families. 

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

 To learn more about Stroke Onward and it’s mission of supporting stroke survivors, families, carepartners, and the healthcare community in navigating the emotional journey to rebuild identities and rewarding lives after stroke, visit their website at strokeonward.org.

Our supporters raised over $200,000 for brain disease research at this year’s Commitment to Cures virtual gala

On April 21, 2021, the American Brain Foundation’s largest annual fundraiser, Commitment to Cures, took place as a virtual gala for the second year in a row. The event, emceed by Jim Cramer, host of CNBC’s “Mad Money,” celebrated and honored the researchers, scientists, and advocates on the front lines of the fight against brain diseases and disorders. Awardees included Dr. Sanjay Gupta for his work raising public awareness of the importance of brain health, Cindy McCain for her awareness-building and philanthropic work for glioblastoma, and Khloé Kardashian for her efforts to raise awareness for migraine. Foundation Board Vice Chair Susan Schneider Williams also officially announced the launch of the 2022 Cure One, Cure Many Award, a research award for the early diagnosis of Lewy body dementia. She spearheaded the initiative in honor of her late husband, comedian Robin Williams, who received the diagnosis of Lewy body dementia after his death. 

The evening also recognized brain disease researchers for their contributions to the field. Honorees included Scientific Breakthrough Award winner Peter Goadsby, MD, PhD, for research leading to the development of new preventive and acute migraine treatments, Potamkin Prize winners Kenneth S. Kosik, MD, and Giovanna Mallucci, MD, PhD, for Research in Pick’s, Alzheimer’s, and Related Diseases, and Sheila Essey Award winner Jan Veldink, MD, PhD, for contributions to ALS epidemiology and genetics.

The event also featured inspiring stories from some of the people living with brain disease, sharing the impact it has on their lives and the lives of their families. 

Commitment to Cures truly exemplifies our commitment to bringing researchers and donors together to cure brain diseases and disorders. To everyone who attended: thank you! You helped us surpass our fundraising goal, raising over $200,000 for brain disease research. 

Relive this exciting night and learn more about the incredible honorees here. We can’t wait for Commitment to Cures 2022!

The American Brain Foundation believes that, one day, we can live in a reality without brain disease—and it all starts with funding research to discover cures. To support our work of connecting scientists with donors, make your gift today.

How research of the whole brain is leading to treatments for multiple kinds of brain diseases

Revolutionary findings in multiple areas of brain research are proving what we already know. A discovery in one area of brain disease will have a profound ripple effect on the understanding and treatment of others. From how Parkinson’s disease treatments have the potential to help people with epilepsy to a drug that kills brain tumor cells, the following discoveries are the reason why the American Brain Foundation funds research across the spectrum of the brain. Learn about the latest innovative research in the world of neurology, and bust some of the biggest brain myths below.

Promising Epilepsy Research and New Treatments Give Hope to Patients

Epilepsy is a neurologic condition that affects one in 26 people in the United States. This Brain and Life® Magazine article outlines developments in the field of epilepsy. Advances in brain disease research have resulted in new treatments such as nasal sprays, neurostimulation devices, and even genetic probes. These treatments bring hope for better condition management to people with epilepsy. Learn more about how studying Parkinson’s disease and other brain conditions have led to some of these incredible discoveries.

That Is Not How Your Brain Works

The brain is not a puzzle in which the pieces work together but for different functions. The “triune” brain myth was disproven years ago, but some people still believe it. Nautilus, a science magazine, seeks to dispel common myths like this one. Since the brain is such a complex organ that still needs to be studied, we’re always learning new things about it. Sometimes, that means amending prior misconceptions. Read the full article to learn about the three biggest brain myths that simply aren’t true.

Experimental Alzheimer’s drug could slow cognitive decline in patients, early results suggest

A new experimental intravenous drug called donanemab has the potential to give people with Alzheimer’s up to six more months of better cognition, memories, and enjoyable time with family. Early clinical trials showed that donanemab slowed the decline of cognition and daily function in Alzheimer’s patients by 32% after 76 weeks compared to the placebo group. It could be an incredible first step toward slowing and potentially even halting cognitive decline in its earlier stages.

New spherical nucleic acid ‘drug’ kills tumor cells in humans with glioblastoma

An early clinical trial in individuals with glioblastoma, a deadly brain cancer, shows that an experimental drug developed by scientists at Northwestern crosses the blood-brain barrier to trigger the death of brain tumor cells. This drug is part of a revolutionary new class of drugs applicable to other neurological diseases. Consequently, scientists hope to use this technology to advance this type of treatment for brain tumor care.

 

The American Brain Foundation believes that, one day, we can live in a reality without brain disease—and it all starts with funding research to discover cures. To support our work of connecting scientists with donors, make your gift today.

(MINNEAPOLIS, April 15) – The American Brain Foundation has partnered with the Alzheimer’s Association, The Michael J. Fox Foundation for Parkinson’s Research and the American Academy of Neurology to establish its 2022 Cure One, Cure Many Award: A research award for early diagnosis of Lewy body dementia. This $3 million, multi-year research award was created to improve the diagnosis of Lewy body dementia (LBD), which causes a progressive decline in cognitive function and is the second most common cause of neurodegenerative dementia, after Alzheimer’s disease.

Currently, LBD can only be definitively diagnosed with a brain autopsy after death. As a result of a delay in diagnosis and misdiagnosis, people with LBD and their caregivers endure daily challenges and uncertainty.

The goal of the American Brain Foundation’s 2022 Cure One, Cure Many Award is to attract the best minds in brain disease research to find a biomarker (diagnostic test) for LBD. The hope is that this will lead to an accurate method of diagnosing the disease giving patients and their loved ones clarity about the prognosis. This will also allow researchers to better study LBD and develop effective therapies.

American Brain Foundation Board Vice Chair Susan Schneider Williams spearheaded this initiative in honor of her late husband, actor and comedian Robin Williams, who received the diagnosis of Lewy body dementia after his death. She will officially announce the award during the Foundation’s upcoming April 21, 2021, Commitment to Cures virtual event.

“I am so hopeful about the inaugural Cure One, Cure Many Award and the changes it could bring. Diagnosis is vital—not only for the LBD patients and caregivers but also for the doctors and researchers. So much time, effort, resources, and life itself can be saved by having an accurate diagnosis,” said Williams.

Funding for the American Brain Foundation’s 2022 Cure One, Cure Many Award is provided by the Alzheimer’s Association and The Michael J. Fox Foundation. The American Academy of Neurology is the American Brain Foundation’s research partner. These partnerships highlight the interconnectedness of brain diseases and the American Brain Foundation’s belief that when we cure one brain disease, we will cure many.

“Better biological measures of brain disease are urgently needed to speed therapeutic development and improve care. More resources, research and collaboration are critical toward those goals,” said Todd Sherer, PhD, CEO of The Michael J. Fox Foundation. “Shared pathology across Parkinson’s disease and Lewy body dementia means that better understanding the biology of one can help advance research into the other, growing the impact of this program across diagnostic lines.”

“The Alzheimer’s Association is pleased to collaborate with these other passionate and dedicated organizations to inject much-needed energy and resources into Lewy body dementia research,” said Maria C. Carrillo, Ph.D., Alzheimer’s Association chief science officer.

“As an added benefit, it may also increase the understanding of degenerative brain diseases, including Alzheimer’s and all other dementia, leading to better diagnosis, improved treatments and effective prevention strategies that may benefit millions of people around the world,” Carrillo added.

Proposals for the award will be reviewed by a panel of preeminent scientists, and can address disorders across the LBD spectrum. Projects should specifically have the potential to identify one or more biomarkers that can be used to diagnose Lewy body dementia as the underlying cause of cognitive impairment.

LBD and other neurodegenerative diseases like Alzheimer’s disease and Parkinson’s disease share many similarities, and patients often experience overlapping symptoms—as well as the abnormal synuclein protein clusters called Lewy bodies. As a result, they are often mistaken for one another, which hinders diagnosis, treatment, and research.

“The American Brain Foundation promotes and invests in research across the whole spectrum of brain diseases and disorders in the belief 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,” said Jane Ransom, the Foundation’s executive director.

Applications for the 2022 Cure One, Cure Many Award will open on July 1, 2021. Grant winners will be selected and announced in December 2021.

To learn more about the award and to see how you can help support this initiative, visit americanbrainfoundation.org/cocm.

To learn more about the application process, visit aan.com/cocm

 

About the American Brain Foundation:

The American Brain Foundation brings researchers and donors together to cure brain diseases and disorders. To learn more, visit our website and find us on Facebook, Twitter, Instagram, and LinkedIn.

Media Contact

Ashley Logan
[email protected]
312-282-4314

(MINNEAPOLIS, April 14) – The American Brain Foundation’s (ABF) Commitment to Cures 2021 annual gala will take place virtually on April 21, 2021, 8-9 p.m. ET to support the researchers and advocates working toward life without brain disease. The event will honor Sanjay Gupta, MD; Cindy McCain; and Khloé Kardashian—each of whom has made an impact on raising awareness for brain disease research. Jim Cramer, host of CNBC’s “Mad Money”, will reprise his role as Master of Ceremonies, with the addition of a musical performance by Grammy-nominated singer Alex Newell from Glee and Broadway.

“On April 21 we have an incredible lineup of all-star advocates, each of whom come from different walks of life, all committed to advancing brain disease research,” said Jane Ransom, ABF executive director. “This event will celebrate the progress we’ve made and honor the leading minds who have created a pathway to hope for millions of Americans impacted by brain diseases—and the best part is that all are welcome to join us from the comfort of their homes.”

Commitment to Cures is a virtual event and open to the public, with ticket prices starting at $40. All proceeds go toward promoting and investing in research across the whole spectrum of brain disease.

Brain disease impacts millions of Americans each year and includes stroke, Alzheimer’s disease, dementia, Parkinson’s disease, multiple sclerosis, epilepsy, migraine, glioblastoma, and many more disabling disorders that can significantly impact an individual’s quality of life. The goal of the Commitment to Cures gala is to bring donors and researchers together to progress treatment of brain diseases and disorders—because we believe that when you cure one, you will cure many.

“Our whole-brain approach recognizes the interconnectedness of brain diseases and supports innovation through research by the best and brightest in the field of neurology,” said David W. Dodick, MD, ABF board chair, professor of neurology at Mayo Clinic’s College of Medicine and director of the Headache Program and Sports Neurology and Concussion Program at Mayo.

To honor the progress in the field, ABF will recognize the following awardees:

  • Public Leadership in Neurology Award: Sanjay Gupta, MD, will be honored for his role in raising public awareness of brain health. As a neurosurgeon and neuroscientist who has become America’s doctor, and through his new book, “Keep Sharp,” Dr. Gupta has made a massive contribution to the public’s awareness of brain health for overall health.
  • Commitment to Cures Award: Cindy McCain is honored for building awareness for glioblastoma and for the philanthropic work she has initiated for the disease after her late husband, US Senator John McCain, succumbed to the disease in 2018. She joined the American Brain Foundation board of directors in January 2020 to help raise disease awareness in the public conscience. Her fundraising work has helped advance neuroscience research and patient care.
  • Scientific Breakthrough Award: The research of Peter Goadsby, MD, PhD has led to the development of biologics and drugs that block the CGRP pathway. As a result, new preventive and acute migraine treatments have been approved which have changed the lives of so many people with migraine. As part of the award, ABF has developed the Goadsby Headache Research Fund in his honor. This endowed fund will create opportunities for better prevention, diagnosis, and treatment for migraine and other headache disorders.
  • Ambassador Award: Khloé Kardashian will be presented with the 2021 Ambassador Award for her work raising awareness for migraine, a disabling disease that impacts more than 39 million people in the U.S. alone. For more than 20 years, she has lived with migraine, and she knows first-hand that it is much more than just a headache. Now, she is empowering those living with the migraine by sharing her story.
  • Ambassador Award: The NFL Players Association’s Mackey-White Health & Safety Committee will be honored for its role in protecting players from and raising awareness of sports concussion. Formed in 2009, the Mackey-White Committee has led the effort to develop safety policies for past, present, and future NFL players.
  •  Potamkin Prize for Research in Pick’s, Alzheimer’s, and Related Diseases:
    • Kenneth S. Kosik, MD, neurologist and professor of neuroscience at the University of California, Santa Barbara, will be recognized for his many contributions to neurodegenerative disease research including his current extraordinary work in Alzheimer’s.
    • Giovanna Mallucci, MD, PhD, neurologist, professor at the University of Cambridge, and director of the UK Dementia Research Institute, is honored for her research into the use of repurposed drugs for treating neurodegenerative diseases.
  • The Sheila Essey Award: An Award for ALS Research: Jan Veldink, MD, PhD, from University Medical Center Utrecht, is recognized for his contributions to ALS epidemiology and genetics, which have been instrumental to the field as it is today and have led to important novel discoveries including several new ALS risk genes.

“I am proud to be a champion for the nearly 40 million Americans who suffer from the painful burden of migraine. Migraine has been an unwelcome part of my life since I was in sixth grade. I want to be a voice for others, who have felt voiceless in their struggle with migraine,” said Khloé Kardashian, recipient of the 2021 Ambassador Award.

In addition to honoring brain research awardees, the ABF will also announce the new groundbreaking 2021 Cure One, Cure Many research award for the early diagnosis of Lewy Body Dementia at Commitment to Cures. This $3 million, multi-year research award was created to find a biomarker for Lewy body dementia (LBD), a degenerative disease that causes a progressive decline in cognitive function and is the second most common cause of dementia, after Alzheimer’s disease.

All proceeds from the Commitment to Cures event go toward funding vital research that will advance the fight against brain disease.

“Please stand with us in the fight against brain disease by attending the virtual event, making a donation, and sharing our mission with colleagues, friends, and family,” said Dodick.

To register for the Commitment to Cures virtual event, make a donation, or learn more about the American Brain Foundation, visit our website at https://www.americanbrainfoundation.org/c2c2021/.

About the American Brain Foundation:

The American Brain Foundation brings researchers and donors together to cure brain diseases and disorders. To learn more, visit our website and find us on Facebook, Twitter, Instagram, and LinkedIn.

Media Contact

Ashley Logan
[email protected]
312-282-4314

Detecting Alzheimer’s, differentiating between types of dementia, reversing nerve damage, and more. This is what’s going on in the world of brain disease research

We’re excited to share four discoveries that change how we understand, diagnose and treat brain diseases and disorders. Discoveries like these help us imagine life without brain disease. Find out how new studies are leading to results that will improve the lives of those impacted by dementia, motor neuron diseases such as ALS, and more.

Imaging of a living brain can help clearly differentiate between two types of dementia

For more than 20 years, scientists have been studying imaging data from the brains of dementia patients with either Alzheimer’s or Lewy body dementia in hopes of pinpointing their differences. Now, imaging has proved there is a difference not only between Lewy body dementia (LBD) and Alzheimer’s but also LBD and Parkinson’s. This discovery—and the new quantitative technique that led to it—promises to lead to more effective treatment for these brain diseases.

Mobility Devices May Boost Children’s Brain Health

An uncle wanted to help his niece with spina bifida, a birth defect causing paralysis in the feet and legs. So he built a wheelchair that changed everything. This innovation gave his niece a way to move around. More importantly, it further proved mobility is crucial for brain growth in early childhood. Learn more about the groundbreaking mobility devices, developed by families and doctors, that are making it possible for young children with reduced mobility to play with their peers.

Ultrasound in the treatment of brain diseases

Over the last few years, scientists in Toronto and MedUni Vienna have developed several revolutionary techniques that use targeted pulses of ultrasound to treat a range of brain diseases. The Viennese technique actually improves brain functions. They can be expected to help people with various neuropsychiatric brain diseases such as Alzheimer’s, Parkinson’s, and neuralgia. Another huge advantage of this technique is that it’s virtually free from any side effects.

Detecting Alzheimer’s Gets Easier with a Simple Blood Test

For much of the past century, a definitive Alzheimer’s diagnosis could only be made during autopsy. But now, advances in technologies are making it possible to detect early signs of the disease from a blood sample. A blood test developed by C2N Diagnostics that can identify Alzheimer’s is now available to most of the U.S. as a routine lab test. This incredible discovery could reduce the need for costly, invasive brain scans and spinal fluid measures. That, in turn, can lead to improved treatments and quality of life for people who may have Alzheimer’s.

ALS Nerve Damage Reversed With New Compound

Scientists at Northwestern University have identified the first compound to repair degenerating brain cells in amyotrophic lateral sclerosis or ALS, a neurodegenerative disease that results in paralysis and then death. This compound improves the health of diseased upper motor neurons. This brings hope to people with ALS. But it also helps those motor neuron diseases such as hereditary spastic paraplegia (HSP) and primary lateral sclerosis (PLS). Prior to initiating a Phase 1 clinical trial of this compound, researchers will complete more detailed toxicology and pharmacokinetic studies.

The American Brain Foundation believes that, one day, we can enjoy life without brain disease—and it all starts with funding research to discover cures. To support our work of connecting scientists with donors, make your gift today.

Why we’re committed to pursuing life without brain disease

The American Brain Foundation brings together researchers, patients and donors to champion brain disease research. We promote and invest in research across the whole spectrum of brain diseases because we know that they connect with one another. When we cure one of these diseases, we will cure many.

And we aren’t alone. We asked some members of our community why they are so dedicated to conducting, supporting, and championing brain disease research. Here’s what some of our research grant recipients, board members and brain disease advocates had to say.

The Brain Is Our Control Center

Alonso Zea Vera, MD, received a 2020 Next Generation Research Grant from the American Brain Foundation for his research on studying brain responses in typically developing children and children with Tourette Syndrome (TS). His goal is to identify a biomarker of TS and tic severity, which he could then use to help develop individualized non-invasive therapy.

Dr. Zea Vera explains that brain disease research is important because the findings have the potential to go beyond the individual disease and even beyond our central nervous system. “The brain basically controls everything we do. Almost every system in which something goes wrong will eventually affect the brain.”

For example, Dr. Zea Vera’s research has implications for more than just Tourette Syndrome. He links Tourette syndrome to obsessive-compulsive disorder (OCD) and attention deficit hyperactivity disorder (ADHD). All three diseases result in patients having trouble controlling certain things. For Tourette Syndrome, its difficulty controlling movements; for OCD, its difficulty controlling certain thoughts and actions; and for ADHD, it’s difficulty controlling external stimuli. It might be that all of these diseases share a similar pathway in the brain, Dr. Zea Vera says.

The possibility that all three of these diseases might share a pathway is what inspires Dr. Zea Vera and what illustrates the interconnectedness of the brain and underlies the importance of our approach to studying the whole brain.

All it Takes Is One Committed Person

American Brain Foundation Board Member Robert Griggs, MD, FAAN, has seen how finding cures for brain disease changes the world—and how investing in more brain research makes this possible.

“One committed person can cure a disease,” he says. “A good example of this is Dr. Jerry Mendell, who discovered several decades ago the cause of spinal muscular atrophy, a disease that was fatal in 100% of the babies who had it.” Dr. Mendell then developed a one-time treatment that helps babies with spinal muscular atrophy develop normally. “This was once the most common fatal neurological disease for babies, and now it’s curable. And that is just the start,” says Dr. Griggs, “We are going to find many other, similarly curable diseases in the years ahead.”

Dr. Mendell’s research, which earned him the American Brain Foundation’s Cure One, Cure Many Award, is proof that investing in brain disease research leads to life-changing cures. By giving new researchers with novel approaches the funds they need to make discoveries, the Foundation could be the engine that will develop treatment for neurological diseases and lead to cures.

Getting One Step Closer to a Cure

Sasha Pina understands the importance of brain disease research better than most. After sustaining a traumatic brain injury at age 16 and subsequently getting an epilepsy diagnosis, her entire life changed. Sasha was no longer able to pursue her dream of playing soccer. Instead, she has dedicated herself to advocating for people with epilepsy and raising awareness about this disorder.

“My hope is that one day, there will be a cure for epilepsy,” Sasha says. “I believe that research is important when it comes to brain diseases because there’s still so much we don’t know. If we keep studying the brain, we may be able to understand why certain brain diseases happen and why they affect the brain, bringing us one step closer to a cure.”

That’s why, along with being an organ donor, Sasha is also a brain donor. As a former athlete who suffered multiple TBIs in her, she believes that by donating her brain to research, she will be a part of paving the way to cures not just for epilepsy, but for all kinds of 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. Donate today to make a difference.

An American Brain Foundation grant funds research into a specific enzyme in the brain that could unlock more effective multiple sclerosis treatment

Multiple sclerosis is a disease of the central nervous system that affects nearly 1 million people in the United States. People with multiple sclerosis experience inflammation in the brain and spinal cord. Such inflammation can strip nerves of their protective coating (called myelin). Doctors call these stripped areas lesions.

When the nerve is missing its protective coating, it disrupts communication between the brain and other parts of the body. This disrupted communication is what causes the symptoms of multiple sclerosis, such as blurred vision or limb weakness.

Studies have shown that targeting a specific enzyme called Bruton’s tyrosine kinase (BTK) can reduce these lesions in the brain. However, exactly how the enzyme does that is not well understood.

Farinaz Safavi, MD, PhD, a Neuroimmunology Fellow at the National Institutes of Health, is looking to change that. Her research aims to understand how BTK induces inflammation to better target treatments for multiple sclerosis and other similar diseases. Dr. Safavi received a 2020 Next Generation Research Grant for her work, which is funded by the American Brain Foundation and the National Multiple Sclerosis Society.

What is the Research About?

Dr. Safavi’s work uses cutting-edge technology to isolate and study specific brain cells to determine how the enzyme causes inflammation. “Studying specific human cells, especially brain cells is not easy, so we use different techniques to differentiate those cells in the lab and then deeply study them,” she says.

In order to pinpoint the exact process, Dr. Safavi is studying what happens before, during and after inflammation. “In order to better understand and treat different diseases, we need to know more detail about the process and about the mechanism underlying every step,” she says.

The overall goals of the research are to identify and define how BTK causes inflammation. From there, Dr. Safavi wants to know how that can be used to create better treatments. A multiple sclerosis treatment that inhibits BTK is already showing a promising effect in early phase clinical trials.

How Does this Research Impact Other Brain Diseases?

Dr. Safavi’s research has impacts beyond treatment for multiple sclerosis. “When researchers investigate the root causes of neuroinflammatory disease or any kind of disease, we basically develop and produce new scientific facts,” she says. “And specifically when we work on a specific gene or protein or molecule that expresses in different cell types, we are producing a new set of scientific information that can be helpful for any other diseases related to those cell types.”

Over time, patients with diseases like multiple sclerosis can start developing neurodegeneration, which is also present in diseases like Alzheimer’s disease and Parkinson’s disease. By better understanding the process of inflammation, researchers can define different targets for preventing irreversible damage to the brain. For example, Dr. Safavi says, we know that inhibiting BTK can reduce inflammation. But we don’t know much about how it reacts with other molecules. “So in that situation, when we know more, we may be able to target those specific proteins or genes to better treat the disease or better control the inflammation,” she says.

BTK expresses itself in specific kinds of cells found in the central nervous system. There’s a growing body of evidence that shows those cells also contribute to neurodegeneration in Alzheimer’s disease.

A multiple sclerosis treatment targeting BTK would focus on reducing inflammation. But the fact that BTK can cause inflammation could be helpful for other conditions. For example, in a patient with a brain tumor, a treatment could activate the same cells to attack the tumor cells.

Why Is Brain Research Important?

For Dr. Safavi, studying the brain is essential because the cells that make up the brain are very sophisticated and differentiated. This makes them hard to repair and heal.

She says she’s thankful to have received a grant from the American Brain Foundation because it allows her to use cutting-edge technology and learn skills that will be helpful in her future career. “At the same time, it can help me to develop a better translational scientific research project, which is helpful to treat the diseases, and it builds a huge scientific foundation for me,” Dr. Safavi says.

The American Brain Foundation’s Next Generation Research Grant program recruits the best and brightest researchers, like Dr. Safavi, to work on early diagnoses, treatments and cures for brain disease and further advance the field. This program is possible thanks to our unique partnership with the American Academy of Neurology, which allows us to tap into the largest brain trust of neurologists and brain disease researchers in the world to support research projects.

The American Brain Foundation was founded to bring researchers and donors together in the fight against brain disease. Next Generation Research Grants fund the innovative research of early-career investigators, encouraging passion for research and laying the groundwork for future success. Learn more about brain disease or make a gift to support groundbreaking brain disease research.

Here’s how a new genetic disorder, COVID-19, and incredible discoveries about Alzheimer’s disease are making waves in brain disease patient care

The groundbreaking research presented in these four articles shows exactly what we mean when we say that all brain diseases are interconnected. Finding a cure for one will lead to cures for many. From how a genetic disorder that affects the brain offers insight into other disorders to the lasting effects COVID-19 can have on the brain, here are the recent hot topics in brain disease news.

How COVID-19 Attacks The Brain And May Cause Lasting Damage

There was early evidence that COVID-19 may be able to affect the brain. But it wasn’t until scientists studied the brain tissue of a patient with COVID-19 after their death that they could confirm this theory. Now, we know the body’s response to the virus can cause symptoms that include forgetfulness, seizures, and even psychosis. Doctors say many affected patients will recover fully from these symptoms, but some are likely to face long-term disability.

Dr. Sanjay Gupta’s prescription for fighting off dementia

Recent research shows that changes in the brain leading to Alzheimer’s disease begins decades before actual symptoms arise. That’s why CNN Chief Medical Correspondent, renowned neurosurgeon, and 2021 Commitment to Cures honoree Dr. Sanjay Gupta shared his insight on how people can create more “cognitive reserves” and extend brain health. One of them? Regular exercise.

Dr. Gupta also sat down with Brain and Life® Magazine to speak more about brain health. He also talked about his bestselling book Keep Sharp. Read more here.

Research Says Alzheimer’s Is Actually Three Distinct Disease Subtypes

A groundbreaking update from research done to the postmortem RNA sequencing in Alzheimer’s patients shows the disease comes in three major molecular subtypes. Each of these subtypes present differently in the brain and hold a unique genetic risk. This discovery has the potential to tell doctors what patients are the most vulnerable to each subtype. It can also show how their disease may progress, and what treatments may suit them best. The findings promise to be “a critical step toward precision medicine for this devastating disease” and lead to better patient outcomes.

NIH researchers identify new genetic disorder that affects brain, craniofacial skeleton

The newly identified linkage-specific-deubiquitylation-deficiency-induced embryonic defects syndrome, or LINKED, may not only be essential for human development but also underlie other disorders present at birth. This discovery by the NIH promises to aid scientists in understanding brain diseases and improving patient care. Researchers hope the study can serve as a guiding framework for unraveling the causes of other undiagnosed diseases.

The American Brain Foundation believes that, one day, we can live in a reality without brain disease—and it all starts with funding research to discover cures. To support our work of connecting scientists with donors, make your gift today.

In October 2018, Kelly Rodenberg left a massage appointment thinking she’d pinched a nerve in her neck. But later that night, Kelly awoke from a deep sleep thanks to lightning bolts running through her left hand. She looked down to see her hand involuntarily shaking.

Over the next few days, she noticed subtle changes. She had trouble getting her left arm in her sleeve. She cut her thumb while slicing an apple and didn’t feel a thing.

But when Kelly, who worked as an admin for 35 years, saw a trail of Rs on her computer screen that she couldn’t explain, she knew it was time to call her local clinic. She realized that she could no longer feel her left hand connecting with the keyboard.

When she called, she was told it was a three week wait to get an appointment. A few hours later, she got a call from a nurse who read the transcript of her call and urged her to see a neurologist.

Within just a few days, Kelly would get a life-changing diagnosis of glioblastoma, undergo major brain surgery and begin a lifelong journey. We spoke to Kelly about her journey with brain disease and how a healthy dose of humor helped her through.

A Critical Diagnosis

When Kelly saw the neurologist, he asked her to do some very simple things. This included flexing her hand, smiling really big, and walking in a straight line. The neurologist noticed her mouth drooping a little bit on the left side, and she was walking a bit crooked. “And I had no idea,” she says. “That’s how subtle it was.”

An MRI confirmed a golf-ball-sized tumor above Kelly’s right ear, which was affecting the left side of her body. The tumor was a glioblastoma, a rare and aggressive type of cancer occurring in the brain or spinal cord. “You sit up in your chair a little bit straighter when the neurologist starts talking about your lifetime in months versus years,” she says.

The neurologist wanted to do surgery as soon as possible. Kelly and her husband opted to get a second opinion at Mayo Clinic because Kelly’s husband got treatment there. The surgeon there told her he didn’t think waiting a few days would make a difference. “From a patient standpoint, we were placed at ease,” she says.

The neurologist told Kelly that even with surgery, there was only a 50-50 chance she would regain movement in her left hand. While he didn’t think the impairment would get any worse, he also didn’t think it would get any better.

The surgery itself was very successful. She was able to go home less than 48 hours later, which is not always the case after brain surgery. The next month was a brain resting period, and then Kelly started chemo and radiation.

Finding the Light and Love

Kelly says her darkest days during the whole ordeal were during radiation, which lasted five days a week for six weeks. Kelly began to feel depressed. Even the thought of getting out of bed to brush her teeth felt overwhelming. So she searched for an outlet. “I ended up just sitting down at the computer and writing a book,” she says.

For Kelly, it was about finding the good in a tragedy, finding the light and love in a heavy diagnosis such as glioblastoma. But it was also about processing her experience with her signature good humor. The book, titled “There’s Something Going On Upstairs: Learning to Laugh My Way through a Cancerous Brain Tumor, One Chemo Cycle at a Time,” is part memoir, part patient roadmap and part comedy.

She writes in the book’s prologue: “About fifty people have encouraged me to write a book. No, I haven’t literally been keeping track, but after dozens of nudges, I began paying attention.”

Writing her book gave her reason to wake up and allowed her to process all that had happened. It also gave her a chance to write the humorous, insightful book she wished she could have read while navigating glioblastoma.

The positive response to her book showed Kelly that she had filled a need. She had helped people like she set out to do.

Life as a Survivor

Just like the neurosurgeon at the Mayo Clinic predicted, the movement in Kelly’s left hand didn’t get any better. “It’s not any worse, but I still have zero use of it,” she says. It makes day-to-day activities, like driving, more difficult. Even folding a load of clothes takes three times longer than it ever did.

More than two years removed from her surgery, Kelly still feels uncertainty about the future. “I still feel that life is lived MRI to MRI, in eight week chunks,” she says. “Until you get that validation or check of approval that, OK, your MRI was good, you don’t plan all that far out.”

But Kelly has come to accept and even embrace her new life. “You learn to appreciate every day, every moment. You burn the candles, you use the good dishes, all that kind of stuff that I didn’t honestly think that much about before October 2018.”

Kelly’s struggle with an invisible disease such as glioblastoma also fostered more empathy. “Nobody can see it. It’s not a cast, it’s not a crutch, it’s not a wheelchair,” she says. “People walking down the street would never guess that I had a brain tumor. It’s just opening up your heart a little bit more and trying to see what people go through, even though it’s not visible to the human eye necessarily, and everybody needs a lesson in that.”

Kelly has taken that increased empathy and turned it into a passion for patient advocacy. She’s active in online patient communities and before COVID-19 she was doing free speaking engagements at long-term care facilities to educate residents on strokes and brain tumors.

She urges patients to give themselves time and grace. “The biggest thing that I could encourage other glioblastoma patients is just to be patient with yourself because it is a very life-changing disease,” she says. “Once you wrap your brain around that it’s something that’ll never go away, I think you give yourself more grace because it will be with you for life.”

As part of her advocacy, Kelly regularly sends copies of her book to people she’s met either in person or in online patient communities. She always inserts the same bookmark with a quote: We can’t always choose the music life plays for us, but we can choose how we dance to it.

For Kelly, that means turning a life-changing diagnosis into a way to connect with other individuals living with a brain tumor and help them navigate the path a little bit easier.

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

A Next Generation Research Grant funded a critical discovery about traumatic brain injuries

Some patients with a severe traumatic brain injury (TBI) will develop a very curious syndrome while being treated in the intensive care unit (ICU). Very little was known about this syndrome when Holly Hinson, MD, MCR, FAAN, received a 2012 American Brain Foundation Next Generation Research Grant to study it. “We were even still arguing about what to call it at the time,” she says.

When patients develop this syndrome, their vital signs go haywire after being stable. “Their heart rates will become very high, their breathing pattern will become abnormal and very rapid, and sometimes they’ll even sweat or experience changes in their pupils,” says Dr. Hinson, an associate professor of neurology at Oregon Health & Science University.

Patients who experience that syndrome, now called paroxysmal sympathetic hyperactivity or sympathetic storming, tend to stay in the ICU longer and do worse once they leave the hospital. Dr. Hinson wanted to figure out a way to identify patients who were at a greater risk of developing the syndrome.

In 2012, doctors began to use a scale to describe the severity of the syndrome, and Dr. Hinson’s project took that scale and applied it systematically to all the patients with a TBI in the ICU. That study found that patients who developed a fever shortly after their injury, specifically in the first 48 hours, were at a higher risk for developing the syndrome.

Expanding the Impact

The fever insight came directly from research supported by the Next Generation grant. That project also gave Dr. Hinson a patient population she could use to study related questions about the syndrome.

On a more personal level, the grant supported Dr. Hinson as she pursued a master’s degree in clinical research. “It allowed me to take some coursework that gave me a more solid foundation in things like biostatistics and clinical trial design, which has served me immeasurably in my career in clinical research,” she says.

Of course, Dr. Hinson’s research expanded from studying TBIs and fever to studying TBIs and inflammation. She began looking for fluid-based biomarkers, such as proteins in the blood that can be easily measured. Biomarkers have uses for diagnosis as well as treatment.

In Dr. Hinson’s case, she’s now using these biomarkers to build how patients might fare after a brain injury. “The thinking being that if you’re able to accurately predict these very important clinical events before they occur, you can change the management for that patient,” she says.

For example, take the case of hemorrhagic contusions, or brain bruises, following a TBI. If you can predict a patient is at higher risk of expanding brain bruises, you’ll ensure they get followup CT scans. On the other hand, if you know a patient has a lower risk, you can spare them extra procedures.

This work reaches beyond brain injuries. Dr. Hinson says it’s very relevant to stroke, particularly hemorrhagic stroke. She applied some of these concepts to patients undergoing cancer treatment who can have some complications involving the brain. “The tool that’s so powerful here is not only the measurement of specific biomarkers, but also this concept of building predictive models and using those models to really inform our decision-making in the intensive care unit,” she says.

Beyond Research

Dr. Hinson sees herself as a physician, a scientist and a mentor. “It’s so critical to bring the next generation of physician scientists into the fold, and to teach them, not only correct techniques and the ways in which to conduct science to produce the highest quality evidence so we can really better care for our patients, but also really to foster and generate and nurture those physician scientists as people.”

In 2017, Dr. Hinson proposed an LGBTQI section at the American Academy of Neurology (AAN) and started the section in 2018. It now has more than 200 members. “Personally, as an out, queer, woman scientist, I felt like I was particularly in a privileged place to be able to start a section that would communicate the AAN’s openness to folks with perhaps not the most traditional identities, that maybe have not been historically represented within neurology,” she says.

The section doesn’t just supports those members. It also provides cultural competency education to all AAN members. It helps doctors better take care of patients who identify as sexual and gender minorities. This is important, Dr. Hinson says, because being a member of the LGBTQI community impacts brain disease in some very specific ways.

For example, using certain gender-affirming hormones can interact with antiepileptic drugs. “To know that, and to be able to navigate that in the clinical scenario, will improve the quality of the care that we deliver to our patients,” Dr. Hinson says.

Dr. Hinson says support she received from AAN and the American Brain Foundation motivates her to give back. “I had this incredible investment, not only in my science, but in me as a physician scientist,” she says, “That investment in the next generation pays off beyond.”

The American Brain Foundation was founded to bring researchers and donors together in the fight against brain disease. Next Generation Research Grants fund the innovative research of early-career investigators, encouraging passion for research and laying the groundwork for future success. Learn more about brain disease or make a gift to support groundbreaking brain disease research.

The latest research on multiple sclerosis, concussion and memory

In this month’s brain health news round-up, we dive into three recent pieces of research looking into multiple sclerosis, concussion and memory. Our understanding of the brain is constantly evolving as new research emerges. With these new studies, we answer our most pressing questions about the complex organ that drives everything we do. Read on to learn more about recent brain research.

Medication May Improve Thinking Skills in Advanced Multiple Sclerosis

A study published in the American Academy of Neurology’s Neurology® journal found that people with the advanced form of multiple sclerosis (MS), called secondary progressive MS, who took the drug siponimod for one to two years had improved cognitive processing speed compared to those who did not take the drug. Study author Ralph H. B. Benedict, PhD, says “While there are currently no drugs on the market in the United States approved for the treatment of cognitive impairment in MS, our study found that siponimod, which is prescribed to slow the progression of physical disability in MS, may also help improve cognitive processing speed in people with advanced MS.”

Accuracy of U.S. College Football Players’ Estimates of Their Risk of Concussion or Injury

Study results suggest that college football players may underestimate their risk of injury and concussion. Researchers studied 296 male, college-aged athletes. They found 43% of athletes underestimated their risk of injury and 42% their risk of concussion, both serious health concerns. The analysis raises ethical concerns about informed participation in sports for young athletes. It also brings up the long-term consequences of sports-related injuries such as concussion.

Studying Amnesia Helps Researchers Understand Memory

Researchers are examining cases of amnesia to learn more about the mysteries of memory more broadly. John Hart Jr., MD, is just one of the researchers with an interest in the storage and retrieval of semantic memory, which includes general knowledge accumulated over a person’s lifetime, such as colors, letters and names. “Damage to white matter after a brain injury may affect connections needed to make new memories, so people may not be able to recall the name of someone they’ve just met or the items they need to pick up at the store, but they can still recall memories about their fourth-grade classmates,” says Dr. Hart. This research could help discover critical connections between other brain diseases and memory.

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

A Next Generation Research Grant funds research into the memory consolidation process and an intervention to improve it

Changes in memory can happen in normal, healthy aging. But in patients with brain diseases, like Alzheimer’s and other types of dementia, memory loss can be severe.

Bryan Baxter, PhD, is a postdoctoral research fellow at Massachusetts General Hospital researching memory loss and interventions to improve memory during sleep. “My hopes for this research are to really understand how memories are consolidated during sleep, with the overall aim of developing interventions to help people that have memory problems,” he says.

His research is made possible by the American Brain Foundation’s Next Generation Research Grants program. This grant received funding from the McKnight Brain Research Foundation and American Brain Foundation, in collaboration with the American Academy of Neurology.

We spoke to Dr. Baxter about what his research means for patients suffering from brain diseases. We also discussed our understanding of the link between memory and sleep.

How Are Memory and Sleep Connected?

Memory loss significantly decreases the quality of life for people who experience it, Dr. Baxter says. When we make a memory, it starts deep in our brain as a short-term memory. That memory then appears on the surface of the brain and becomes a long-term memory.

This process of transferring memories happens during sleeping. We refer to this as sleep dependent memory consolidation and it involves coordination between several areas of the brain. “We know that in aging, healthy aging, and in people with age dependent memory loss, they actually have dysfunctional brain activity across these different areas,” says Dr. Baxter. “Understanding what is going on in a healthy brain when it goes wrong and understanding how these networks interact is really useful for a wide spectrum of diseases.”

Identifying and Treating Memory Loss

Part of Dr. Baxter’s research focuses on finding a way to identify when memory consolidation happens by recording brain activity on the surface of the head while someone is asleep. “This, in turn, could lead to developing interventions or understanding if interventions are actually working,” he says.

The intervention Dr. Baxter is studying is playing sounds when somebody is sleeping. These sounds need to play while memory consolidation occurs. That’s why identifying an easy way to determine when that is happening is so important. “Your ongoing brain activity is doing everything you’re supposed to do while you’re sleeping,” he says. “If you play these sounds at a very particular time, you can evoke this activity and, in turn, likely improve memory.”

How Can this Research Impact Other Brain Diseases?

Memory and memory consolidation is key to all living things, Dr. Baxter says, and when the process goes wrong, the impact can be huge. “When it goes wrong, which happens in a lot of different brain diseases, it can severely affect the quality of life of people,” he says. “Dementia, age-related memory loss, Parkinson’s disease, all these different neurodegenerative and neurological diseases are related to networks in the brain.”

Dr. Baxter’s research aims to both further understand how the memory consolidation process occurs and how to improve it. “We’re trying to understand how activity in different networks relates to each other and develop tools to understand that and apply that in the future,” he says. “Other people can take these tools to apply it to other diseases as well.”

The American Brain Foundation’s Next Generation Research Grant program recruits the best and brightest researchers, like Dr. Baxter, to work on early diagnoses, treatments and cures for brain disease and further advance the field. The program is possible through our unique partnership with the American Academy of Neurology, which allows us to tap into the largest brain trust of neurologists and brain disease researchers in the world to support research projects.

The American Brain Foundation was founded to bring researchers and donors together in the fight against brain disease. Next Generation Research Grants fund the innovative research of early-career investigators, encouraging passion for research and laying the groundwork for future success. Learn more about brain disease or make a gift to support groundbreaking brain disease research.

A daughter moves through a delicate dance as caregiver to her father with Lewy body dementia

Nancy Poland remembers the day she shifted into a caregiver role for her father with brain disease, Lee. It was 2005. The two met for lunch at a sandwich bar near their respective offices in Minneapolis. Lee handed her his checkbook and said, “Take this. I can’t figure it out anymore.”

While Nancy and her sisters had noticed their father had become more forgetful, she was shocked to discover Lee was $8,000 in debt and his business was barely making any money. That lunch marked the beginning of Nancy’s journey as a brain disease caregiver—one of ups and downs and lessons learned.

A Delayed Diagnosis

Lee was a street-smart, outgoing businessman who loved to tell stories. So it was difficult for Nancy and her three sisters to watch their father’s decline without knowing the cause. Doctors only diagnosed Nancy’s father with Lewy body dementia (LBD) in 2012, shortly before he died. Unfortunately, LBD can only be definitively diagnosed with a brain autopsy after death, so Lee’s delayed diagnosis is common.

Several years earlier, in 2005, Lee had initially been diagnosed with vascular dementia. At the time, Nancy and her family felt relief it wasn’t Alzheimer’s. “We thought, ‘Well, we can live with this. He needs some help, but he can still function,’” Nancy says. “But then he got worse… We didn’t know what was in store for us.”

Nancy’s parents took care of each other until the end. “[My mother] had the mental faculties, but she had a lot of physical problems,” Nancy says. “She had really bad back trouble and she ended up with kidney cancer, so he took care of the physical things. He would get their toast ready in the morning, and she would do their pills and plan the little meals.”

The Role of Caregiver

Over the years, Nancy watched her father’s condition get worse. Although Lee’s memory seemed intact, his thinking and self-control was not. He couldn’t process information in the same way. Nancy stepped in to help organize her parents’ lives, taking on their financial affairs and legal paperwork, as well as house repairs and maintenance. She also drove her father to and from his office, bonding over coffee and stories of his childhood on the way.

Near the end of his life, when Lee wasn’t able to move his body, he still seemed to recognize his daughters. “They said he was a functional quadriplegic. It’s not that his limbs wouldn’t move, but that his brain wouldn’t connect with his limbs to tell him what to do,” Nancy says. “We were pretty sure he knew us, because he’d get tears in eyes when he saw us and he would react to us, but he could barely say even a word or two.” Seeing her father like this—such a contrast to the friendly, entrepreneurial storyteller she knew—was horrible.

During this time, Lee’s daughters each played a unique role in caregiving. Nancy acted as the administrative one, using her experience in government and nonprofit work to apply for medical assistance and complete paperwork. Her older sister offered her caring, sensitive nature as the one to stay by their father’s side and attend to his needs. Another sister is a therapist who works in rehabilitation with people with head injuries. Despite living out of state, she understood the medical language and wrote letters to Lee’s doctors. With Nancy acting as the hub, the sisters worked together to care for their father.

It was a lesson for Nancy—everyone can contribute to caregiving by drawing on their strengths. “I just learned that we all have our gifts, and that was my gift to be able to organize things and keep things in order,” she says. “Even though I would like to be like my sisters, they’d probably like to be more like me. We’re all given gifts for a reason.”

Caregiving as Dancing

As a writer, Nancy felt she had to share her experience. But it didn’t happen right away. “It just takes a long time for your brain to process things and to grieve,” she says. The resulting book, Dancing with Lewy, not only includes Nancy’s story but also several of her father’s poems, which give a first-hand perspective of the man he was.

The title of the book alludes to how caring for someone with a brain disease requires a delicate balance. “It’s hard to be direct, especially with my father who was like, ‘You’re not going to tell me what to do’,” she says. “I just feel like it was a constant dance, with him taking a step and me taking a step, and sometimes we danced in harmony and sometimes we were miles apart.”

Dancing with Lewy also serves as a resource for others who are touched by brain disease. Nancy’s most important piece of advice for brain disease caregivers: Don’t do it alone. “You’ve got to get your rest,” she says. “No matter what your financial situation, there’s probably going to be help out there… Just don’t do it alone, because burning yourself out is not going to help anybody.”

Nancy tried to take one day each week for herself, a day when she wouldn’t visit her parents, and also planned a couple much-needed vacations, trusting her father was in good hands while she was away. Through her experience, Nancy knows that leaning on family members and other resources allowed her to maintain the strength she needed to continue caregiving.

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

Learn about research on the link between Multiple Sclerosis and certain cancers and the link between finances and Alzheimer’s

Brain diseases are interconnected. That means when we make a discovery in one disease area, it may be useful in another. This month, we look at how researchers are building connections between brain diseases and symptoms. From neuromuscular to neurodegenerative, here are the latest articles in the field of brain disease research.

Multiple Sclerosis May Not Put You at Risk for Breast, Colorectal Cancers

A recent study in the journal Neurology® finds that people with multiple sclerosis (MS) may not be at higher risk of developing breast and colorectal cancer. “This is good news for people with MS, because earlier studies have shown a link between MS and breast and colorectal cancers,” said study author Ruth Ann Marrie, M.D., Ph.D. The study did find that people with MS had a 72% greater chance of developing bladder cancer. “The increased risk of bladder cancer in people with MS may have to do with the fact that people with the disease are more likely to have urinary tract infections and use catheters,” said Dr. Marrie.

Financial Presentation of Alzheimer Disease and Related Dementias

Is there a link between dementia and finances? A recent study found people with Alzheimer’s disease and other dementias were more likely to miss bill payments years before their diagnosis. In addition, they saw reductions in their credit scores in the same period. With this finding, worsening financial standings are among the earliest signs of cognitive decline for neurodegenerative diseases.

Is There a Link Between COVID-19 and Stroke?

Research and anecdotal evidence suggests a connection between COVID-19 and an increased risk of stroke. An article in the American Academy of Neurology’s Brain & Life® Magazine explains that one study found stroke risk in patients with COVID-19 is seven times higher than in patients with the flu. The connection is because the immune reaction and increase in inflammation can lead to clots, triggering a stroke. If you or someone you know is experiencing symptoms of a stroke, such as sudden numbness or weakness in the face, arm or leg, confusion, or difficulty speaking, call 911 immediately.

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.

Celebrating what you’ve helped us accomplish over the last year, and looking forward to what’s to come

The American Brain Foundation is inspired by the dedication of the brain disease community to pursue life without brain disease. This was a particularly challenging year. But we’re inspired by efforts to virtually unite in advocacy, place neurological diseases on the national stage and more.

Here’s what you’ve helped us accomplish in 2020:

Taking Commitment to Cures Virtual

Because of COVID-19, we transitioned our in-person gala to a virtual event to celebrate outstanding researchers, patients and advocates. Our Commitment to Cures gala stayed true to raising funds for brain disease research. Because of you, the virtual gala was a success. We were proud to spotlight neurologists, researchers, advocates and patients like Jim Cramer, host of CNBC’s Mad Money, actor Emilia Clarke, hockey legend Sidney Crosby, and many others. Learn more about each of this year’s winners on our Awards page.

Supporting 29 Scientists with Next Generation Research Grants

Through the funding of our generous donors, we awarded new grants to 12 outstanding early-career investigators studying brain diseases and disorders, in addition to 17 existing grantees. In partnership with the American Academy of Neurology (AAN), we invested in a broad range of outstanding research projects, from  swallowing disorders in Parkinson’s patients. Your support helps us launch promising research careers that will one day find a cure for brain disease.

Spotlighting Neurological Disorders in USA Today

We put brain disease in the national spotlight with two articles featured in USA Today’s Future of Personal Health publication. Our Board Chair, David Dodick, MD, FAAN, shared breakthroughs in research and treatment and how they offer hope to those with brain diseases and disorders. We also worked with experts to share five ways to keep people with Alzheimer’s Disease safe during the COVID-19 pandemic. Because we elevated brain disease discussion to a national level, we reached a wider audience to raise awareness for these diseases.

Speaking Honestly about Lewy Body Dementia at Robin’s Wish Event

Our vice chair Susan Schneider Williams opened up about her late husband Robin Williams’ fight with Lewy body dementia at our Robin’s Wish Event, a discussion about the Robin’s Wish film and a behind-the-scenes look at what went into its creation. While fostering an honest dialogue about LBD, Susan and the American Brain Foundation worked to create the LBD Research Fund that invests in research to discover a biomarker and improve diagnoses for this devastating disease.

Establishing the Traumatic Brain Injury (TBI) Fund

This year, the American Brain Foundation established the Traumatic Brain Injury (TBI) Fund to help raise awareness about TBI and fund much-needed research. In the United States, approximately 2.87 million people experience a TBI each year. Our efforts were amplified by This Hits Home director Sydney Scotia, who selected the fund as a preferred charity. Her award-winning documentary unveils the devastating long-term effects of traumatic brain injuries that survivors of intimate partner violence often face.

With everything you’ve helped us accomplish in 2020—in the face of a pandemic and a changing virtual world—we cannot wait to continue this work in 2021 with the brain disease community by our side.


Dear American Brain Foundation Reader,

We hope the articles you’ve been reading have increased your understanding of individual brain diseases and disorders, how they are all connected, and their impact on millions of people across the world.

The American Brain Foundation provides this content free of charge in an effort to raise awareness of these devastating diseases. Will you support this valuable resource by making a gift today?

Our work is made possible by gifts from readers like you. Your gift will help us build awareness, fund critical brain research, and find treatments and cures for brain diseases.

Please consider making a gift today to support this work.

Sincerely,
The American Brain Foundation team

A Next Generation Research Grant funds a treatment protocol created specifically for those suffering from Parkinson’s

Parkinson’s disease affects many aspects of someone’s motor functions, one of which is swallowing. Doctors call this disorder dysphagia and can reduce a patient’s quality of life. It can also lead to pneumonia—the leading cause of death for Parkinson’s patients.

“But despite this being the leading cause of death in many neurologic diseases, including Parkinson’s, treatments to improve swallowing are pretty limited,” says James Curtis, PhD, Speech-Language Pathologist and Postdoctoral Research Fellow at Columbia University.

Dr. Curtis is working to develop a more effective treatment for dysphagia specifically for Parkinson’s patients and others suffering from other movement disorders. His research is made possible by the American Brain Foundation’s Next Generation Research Grants program. The Parkinson’s Foundation and American Brain Foundation, in collaboration with the American Academy of Neurology.

We spoke to Dr. Curtis about what his research could mean for dysphagia treatment and our understanding of Parkinson’s and other movement disorders.

What Is Dysphagia?

Dysphagia, or disordered swallowing, is very common among Parkinson’s patients and can occur at any stage of the disease. It can range from mild to severe and include coughing and throat clearing while eating or drinking, feeling like food gets stuck in the throat, and difficulty swallowing certain foods or liquids or trouble swallowing anything at all.

Trouble swallowing can cause decreased quality of life. “Swallowing is a life-sustaining behavior, but it’s also something that is a big part of many different cultures,” says Dr. Curtis. He points to breaking bread and sharing meals with friends and family.

When someone has trouble eating and drinking, they tend to isolate themselves. “They become very depressed, and not only is that bad for quality of life, but that actually exacerbates medical outcomes because they are no longer being active, and other parts of their health starts to deteriorate as a result,” says Dr. Curtis.

Dysphagia can also lead to serious medical issues, including pneumonia. When food or liquid enters the airway while trying to swallow, called aspiration, bacteria can suddenly appear in the lungs. This can cause pneumonia.

What Are the Options for Dysphagia Treatment?

The current gold standard treatment is expiratory muscle strength training, and it focuses on strengthening the breathing muscles. Its effect on swallowing is pretty small, says Dr. Curtis. “This has led me to be really interested in identifying and developing new and robust swallowing treatments designed specifically for people with neurologic diseases, including Parkinson’s disease,” he says.

Breathing and swallowing are very related actions, and it’s impossible to breathe and swallow at the same time, Dr. Curtis says. “Our voice box is open when we’re breathing, but then it has to close in a very timely and complete manner during swallowing in order to prevent stuff from going down the wrong pipe,” he says. “This new therapy is working on coordinating these two behaviors in a way that’s most optimal for swallowing.”

During his PhD program, Dr. Curtis identified a treatment called respiratory swallow training that looks to improve swallowing. “This novel therapy is training people with Parkinson’s disease to do what we’ve identified to be as the most safe for swallowing,” he says.

What’s Next for this Treatment?

Working with Parkinson’s patients presents some unique challenges because of the motor impairments that come with the disease. That’s why developing a treatment specifically with those limitations in mind is important. “Swallowing is very much a motor task, just like throwing a baseball is,” Dr. Curtis says.

Dr. Curtis will conduct a randomized controlled trial of this treatment, which was studied once before in relation to head and neck cancer at Northwestern University. “I’m extending that into brain diseases essentially, and tailoring the protocol specifically for people with brain diseases who have challenges with learning motor skills.”

If the trial gets positive results, practitioners should be able to employ this new treatment immediately. That’s because there’s very little training and there is no need equipment or devices.

Applying this Research to Other Brain Disorders

Dysphagia affects people who suffer from a wide range of brain diseases. “We see the similarities of swallowing problems and impairments and respiratory swallow coordination,” Dr. Curtis says. “So I do think that by studying this novel therapy in Parkinson’s disease, it will definitely expand and probably be applicable to many brain diseases.”

This kind of research into dysphagia treatment wouldn’t have been possible without the American Brain Foundation’s Next Generation Research Grant program, says Dr. Curtis. “Without this, I would have had to jump straight into research at a university medical center without getting these extra years of really specialized training,” he says. “It’s going to enhance and really direct my long-term line of research in the areas of brain disease and swallowing rehabilitation.”

The Next Generation Research Grant program recruits the best and brightest researchers, like Dr. Curtis, to work on early diagnoses, treatments and cures for brain disease and further advance the field. This program is possible thanks to our unique partnership with the American Academy of Neurology. The Grant allows us to tap into the largest brain trust of neurologists and brain disease researchers in the world to support research projects.


Dear American Brain Foundation Reader,

We hope the articles you’ve been reading have increased your understanding of individual brain diseases and disorders, how they are all connected, and their impact on millions of people across the world.

The American Brain Foundation provides this content free of charge in an effort to raise awareness of these devastating diseases. Will you support this valuable resource by making a gift today?

Our work is made possible by gifts from readers like you. Your gift will help us build awareness, fund critical brain research, and find treatments and cures for brain diseases.

Please consider making a gift today to support this work.

Sincerely,
The American Brain Foundation team

The latest news on brain health featuring an app created by teens, new study developments and Major League Baseball

In this month’s brain health news round-up, we review social, technological and academic advancements in the field of brain disease. From Nigerian-Irish teens developing an award-winning dementia app to a clinical trial evaluating a treatment for spinal muscular atrophy, here are the brain disease innovations the community has recently accomplished. These stories remind us that together, we can outsmart brain disease.

Nigerian-Irish Teen Girls Win Prize for Dementia App

Teens Rachael Akano, Margaret Akano and Joy Njekwe are the champions of Technovation Girls. It’s a 12-week international competition that challenges young women to develop an app to solve a problem in their community. Their app, Memory Haven, beat more than 1,500 submissions from 62 countries. Memory Haven targets memory loss, difficulty with recognition and difficulty with speech for those with dementia.

Positive Results from a Study of a Therapy for Treating Spinal Muscular Atrophy

Scholar Rock announced positive results from an interim analysis of its phase 2 clinical trial evaluating SRK-015, a therapy for treating spinal muscular atrophy (SMA). Patients with SMA types 2 and 3 showed notable motor function improvements over six months of treatment with SRK-015. Higher dose treatments led to greater improvements. Scholar Rock will likely announce 12-month treatment results with SRK-015 later in 2021.

Study Raises Question About Role of Leisure Activity in Dementia

In Neurology®, the medical journal of the American Academy of Neurology, a new study found no association between participating in leisure activities at age 56 and the risk of dementia over the next 18 years. This new study also found some people with a later diagnosis stop participating in leisure activities years before diagnosis. Previously, studies have suggested that taking part in leisure activities, like playing cards or gardening, may be associated with a lower risk of developing dementia.

All 30 Major League Baseball Teams Endorse League-Wide Lou Gehrig Day

On June 2, all 30 Major League Baseball teams will celebrate Lou Gehrig Day. The date is the day famed ballplayer Gehrig died, as well as the day he started his record-breaking consecutive games streak. The Lou Gehrig Day Committee—a group of ALS advocates—has been working tirelessly to unite the league in wearing a 4ALS patch and honoring Gehrig (and everyone affected by ALS) in a ceremony on the day.

AI May Help Identify Patients With Early-Stage Dementia

Early detection of dementia is difficult due to subtle initial changes and a small number of dementia experts. Machine-learning research and artificial intelligence can now examine cognitive decline with tools that analyze things like typing speed, sleep patterns and speech. This is not meant to replace doctors but assist them in spotting dementia.

Dear American Brain Foundation Reader,

We hope the articles you’ve been reading have increased your understanding of individual brain diseases and disorders, how they are all connected, and their impact on millions of people across the world.

The American Brain Foundation provides this content free of charge in an effort to raise awareness of these devastating diseases. Will you support this valuable resource by making a gift today?

Our work is made possible by gifts from people like you. Your gift will help us build awareness, fund critical brain research, and find treatments and cures for brain diseases. 

Please consider making a gift today to support this work.

Sincerely,
The American Brain Foundation Team

A Next Generation Research Grant funds the search for a marker for this common movement disorder

Sometimes you see a car speeding down the road and suddenly have to stop. When that occurs, there’s a specific part of your brain that manages that split-second action. This part of the brain is more active in people with Tourette syndrome, a movement disorder whose main symptoms are repetitive movements or unwanted sounds.

This part of the brain is the research focus of Alonso Zea Vera, MD, a neurologist at Cincinnati Children’s Hospital Medical Center and recipient of the Clinical Research Training Scholarship in Tourette Syndrome as part of the American Brain Foundation’s Next Generation Research Grants program. This grant has funding from the Tourette Association of America and the American Brain Foundation in collaboration with the American Academy of Neurology.

We spoke to Dr. Zea Vera about what his research could mean for our understanding of Tourette syndrome and other brain disorders.

A Better Understanding of Tourette Syndrome

Chronic tic disorders such as Tourette syndrome are common, affecting approximately 1% of youth. Patients often outgrow their symptoms or gain better control of their tics as they get older. “The prefrontal cortex gets stronger as we age, and that might be why patients have better control,” Dr. Zea Vera says. “If you are able to figure out how these patients get over their symptoms or what happens in their brain to get over their symptoms, the next step would be, ‘How do we make this happen for patients who are having more difficulties?’”

The study will use electroencephalogram (EEG) to evaluate electrical activity in the brain. Doing so will determine how the brain reacts to different situations. “If we get enough information and we find a specific characteristic of this ability to stop your actions, our hope would be that this could be used as a marker,” Dr. Zea Vera says. Researchers could use this marker to diagnose and treat patients as well as better select patients for clinical trials to test treatments.

How this Research Applies to Other Brain Disorders

Dr. Zea Vera links Tourette syndrome to obsessive-compulsive disorder (OCD) and attention deficit hyperactivity disorder (ADHD). Dr. Zea Vera asks us to think about these diseases as having trouble controlling certain things. For Tourette syndrome, it’s difficulty controlling movements; for OCD, it’s difficulty controlling certain thoughts and actions; and for ADHD, it’s difficulty controlling external stimuli.

It might be that all of these diseases share a similar pathway in the brain, Dr. Zea Vera says. “If we find what we hope to find, it will be interesting to see if there’s something similar happening in patients with these other conditions,” he says. If there’s something similar happening in the brain, then treatments that work for one disorder could be adapted to help patients with another disorder.

The Next Generation Research Grant program recruits the best and brightest researchers, like Dr. Zea Vera, to work on early diagnoses, treatments and cures for brain disease and further advance the field. The program comes from our unique partnership with the American Academy of Neurology to support research projects. It allows us to tap into the largest brain trust of neurologists and brain disease researchers in the world.

The American Brain Foundation was founded to bring researchers and donors together in the fight against brain disease. Next Generation Research Grants fund the innovative research of early-career investigators, encouraging passion for research and laying the groundwork for future success. Learn more about brain disease or help us in our mission by giving today.

A high school English teacher shares her long journey to a diagnosis of Lewy body dementia

In 2008, Maureen Kessler started experiencing a confusing array of symptoms that began with mysterious pain all over her body. The pain, along with noticeable changes in her memory, impacted her ability to work and her relationships with family and friends.

In her search for relief, Maureen went from specialist to specialist for years as they treated seemingly random, disconnected symptoms from brain fog and headaches to hallucinations and high blood pressure. Her diagnoses were just as varied: fibromyalgia, hypertension and, finally, Parkinson’s disease.

While “Lewy body dementia” had been brought up during several doctor visits, Maureen’s neurologist was initially hesitant to diagnose her because the disease typically affects older people. It was only after she found out she had cancer seven years later and her doctor completed a full medical history that she received her diagnosis.

Lewy body dementia is the second most common form of dementia and affects more than 1 million people in the U.S. But the disease is not well understood and getting a diagnosis can be difficult. Many people aren’t diagnosed until after their deaths.

Read on as Maureen shares her journey to a diagnosis, how Lewy body dementia has affected her life, and why it’s important to raise awareness about this disease.

Affecting Every Part of Life

When her Lewy body dementia symptoms first began, Maureen was a passionate high school English teacher raising two kids and caring for her aging parents. The brain fog, memory loss and other symptoms made it harder and harder to teach. “It just seemed like I was losing control of something that I was very good at,” she says.

Once a passionate organizer, Maureen began entering the classroom with sticky notes on her hands to remember things she used to not even have to think about. She even found herself forgetting the names of characters in books she had taught for years. “The students were finishing my sentences,” she says.

At this time, Maureen received the chance to be a reading specialist for the high school and run a whole new reading program. Despite her excitement about the opportunity, she knew it wasn’t possible with her symptoms. “I said, ‘I can’t even teach. I can’t do this.’ I just couldn’t do it anymore, and I didn’t know what to do,” Maureen says.

The same year she retired from teaching and applied for disability, Maureen’s husband and father died, and a few years later, her mother died. At the time, her undiagnosed Lewy body dementia made those losses even more isolating. The years of unanswered questions and troubling symptoms strained Maureen’s other relationships with friends and family. “I’m pretty much totally isolated now,” she says.

A Long Road to a Diagnosis of Lewy Body Dementia

In addition to the initial pain, Maureen developed headaches and issues with her vision. “I started getting some weird lights in the side of my eyes, just a bunch of crazy things,” she says. Still, Maureen continued to put her children and other responsibilities first. “As other symptoms came along, I would try to fit my kids in before me,” she says.

Then one day in late 2009 when she was teaching, something felt wrong. She stopped by her doctor’s office on the way home from school. When they took her blood pressure, they told her, “You’re going right to the hospital. You’re off the charts.” Her list of symptoms expanded to include high blood pressure that was especially difficult to treat.

The disease also manifested in sleeping problems. At first, Maureen’s kids told her she was talking in her sleep. Then they told her she was yelling in her sleep. “My son came in to try to wake me up one night, and somehow I had the remote control in my hand, and I threw it,” Maureen says. “I didn’t know he was in the room.”

Maureen’s neurologist referred her to a sleep doctor, who diagnosed her with an REM sleep behavior disorder. She had been acting out her dreams. It was then that Maureen heard about Lewy body dementia for the first time. But the doctor assured her Lewy body dementia wasn’t the cause. “No, no, no, not you,” she remembers hearing. The sleep doctor told her she was too young. Instead, they believed she had Parkinson’s disease.

But Maureen’s symptoms got worse, and she kept developing new ones. She began to experience hallucinations and short-term memory loss.

The doctor that finally made the Lewy body dementia diagnosis was Maureen’s primary care physician. When she wrote down Maureen’s complete medical history to be sent to the doctors treating her cancer, she wrote down Lewy body dementia right at the top. Maureen felt relief finally having a diagnosis that captured the scope of her experience.

Over the next six months, she underwent surgery, chemotherapy and radiation treatment to beat cancer. But unlike with Maureen’s cancer, there is no surgery or treatment to remove the Lewy bodies. “I’d take cancer again and again if Lewy would go away and let me have myself back,” she says, “I am a completely different person now.”

The Importance of Awareness

Maureen has never met anyone else with Lewy body dementia. She shares her story so that others might know what it’s like to live with this disease. “I felt that I just wanted to offer something to this community that I hadn’t been able to find really,” she says. “Also, I don’t want this all to be for nought.”

Maureen knows that her delayed diagnosis affected her treatment options and care. “With Lewy body dementia, the earlier you catch it, the more you can be aware and get tools to help you cope with living with this,” she says. “But now, I’m past that point.”

She sees parts of herself in what happened to actor Robin Williams. He was thought to have Parkinson’s disease and was only diagnosed with Lewy body dementia after his death. “This sounds so familiar,” she thought to herself as she watched Susan Schneider Williams speak about her late husband’s symptoms.

Susan Schneider Williams is now the Vice Chair of the American Brain Foundation and raises money for the disease through ABF’s Lewy Body Dementia Fund. The Fund supports innovative research projects searching for a biomarker to improve diagnosis and treatment.

Maureen understands the power of this research. “The more research, the more awareness and the more knowledge, the more quickly you get results,” she says.

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

A hard-working man describes the struggle and strength in his experience recovering from epilepsy

For the first 32 years of his life, Joey Gaines had seizures from epilepsy. He had seizures that changed his level of awareness and others that made him lose consciousness completely. He had two massive seizures during his teenage years that resulted in days-long comas and extensive memory loss.

With the help of his doctor, Joey was able to keep his epilepsy relatively under control for several years. He built a career as a pipe welder and worked in construction. But before long, the seizures became more frequent and intense—and ultimately untreatable with medication. He was forced to quit his job. According to his doctor, it was a case of life or death, and the only viable option was surgery.

Pursuing Treatment

Doctors determined that the part of Joey’s brain responsible for his seizures was in his left temporal lobe. This part of the brain is usually the more dominant lobe and is responsible for speech and motor skills. However, a series of tests indicated that the right side of Joey’s brain had taken over these functions. Doctors ruled that Joey would be an excellent candidate for surgery. In addition, it was possible to remove the damaged area in the left side of his brain.

Joey’s surgery—a left anterior temporal lobectomy—was set for April 13, 1999. Unfortunately, during surgery, surgeons found there was more extensive brain damage than expected. They had to remove the entire left temporal lobe, including the part of the brain that stores personal memories, as well as scar tissue from the seizures he had experienced his whole life. Doctors told his parents that if he survived the surgery, he would likely live the rest of his life in a wheelchair, unable to walk, work, or feed himself.

Miraculously, he was able to not only survive, but thrive post-surgery. For the first three weeks after surgery, he wasn’t able to walk or talk. But with intensive physical therapy, Joey began to regain use of the right side of his body. Only a few weeks later, he was completely mobile. “Seven weeks after having that operation,” Joey says, “I came off the back porch jogging for the physical therapist, walked a half a mile down the road. That morning I’d done 25 jumping jacks.”

Even his doctors couldn’t believe his recovery. About a year after his surgery, Joey visited the neurosurgeon who had operated on him. The doctor was in awe. “All my years in my profession, I’ve never, ever seen a grown man have that much of his brain removed and get up and walk away like he’s never been sick,” Joey remembers him saying.

It’s been 21 years since his surgery. But Joey never regained the memories from the part of his brain now gone. When friends and family show him pictures of who he was, Joey doesn’t remember that man. “He died. I know nothing about him,” Joey says. “I’m 21 years old on the left side of my brain. And I’m 53 years old on the right side.”

Committed to Recovery

Joey’s recovery wouldn’t have been possible without the extreme level of grit and faith he demonstrated each step of the way. He worked hard to succeed. During one appointment, his doctor pointed out what Joey had going for him: his strong faith, his unshakable will, and his positive outlook.

Joey’s ever-present support system was also important. He credits his doctors’ focus on his quality of life to help him achieve the life he has today. That includes looking beyond the stigmas of traumatic brain injury and illness. “The greatest thing I remember most about my neurologist is the heartfelt statement of compassion he said to me: ‘Joey Gaines, if it’s the last thing I do, one way or another, I am going to get you straightened out,’” Joey says.

His family also provided invaluable support during his recovery. Before her retirement, his wife, Linda, was in the nursing industry, at one time serving as nurse manager of a rehabilitation department specializing in brain injury. Since the two met in 2011, 12 years after his surgery, Joey’s recovery has seen significant improvement.

Because Joey’s seizures began when he was so young, his parents always saw him with epilepsy. It came to define him in their eyes. After surgery, however, they had a chance to reconnect and get to know him as they never really had.

For Joey, life before and after surgery paints a stark contrast. “Picture yourself living in a jail cell, 24 hours a day, seven days a week. You can see the outside world, but every time you try to reach beyond those bars, you have an episode of seizures, and it sets you back,” Joey says. “But undergoing brain surgery, it’s like somebody comes and unlocks the door and sets you free.” Despite all the challenges he has faced, Joey finally feels a profound sense of freedom.

An Independent Life

Today, Joey no longer has any seizures, does not have to take medication, and lives an independent life near Nashville, Tennessee. He still works 60 to 70 hours a week in the piping industry because he retained those skills in his long-term memory. Joey drives and has gone skydiving. He even traveled to Austria to share his story at a neurology conference. Besides a hairline crack scarring the left side of his head, people in passing would not be able to tell that Joey has been through something extraordinary.

Sharing his story is important to Joey. He wants to encourage healthcare providers and caregivers to show compassion to people with brain injuries and epilepsy—because that compassion made such a significant impact on his own journey. “The importance of compassion in the medical field can have a tremendous impact on a patient’s life, and results are life-changing,” Joey says.

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

The latest news on brain health featuring a documentary on traumatic brain injuries and advice from neurologists

In this month’s brain health news round-up, we take a glimpse behind closed doors to see how brain disease impacts different people across the nation. From the impact of COVID-19 on those with Alzheimer’s disease to the relationship between domestic violence and traumatic brain injuries, we look at what life is like with brain disease.

Keeping people with Alzheimer’s safe during COVID-19

Alzheimer’s disease does not increase a person’s risk for COVID-19 infection. But they may have a greater risk for complications due to older age and other preexisting conditions. So it’s important to take safety precautions. We partnered with Media Planet and USA Today on their Neurological Disorders campaign to help caregivers keep their loved ones with Alzheimer’s safe and maintain their quality of life.

“This Hits Home” documentary sheds light on domestic violence and traumatic brain injuries

More than 20% of women in the U.S. sustain severe physical injuries from intimate partner violence. In addition, more than 75% of these women sustain traumatic brain injuries. Award-winning documentary “This Hits Home” unveils the devastating long-term effects survivors often face as a result of intimate partner violence. The film premiered at the Boston Film Festival in September 2020 and screened as part of the Montreal Independent Film Festival in October. The director has chosen the American Brain Foundation as a preferred charity. Support research into Traumatic Brain Injury (TBI).

Neurologists explain COVID-19 implications on different neurologic conditions

The current pandemic has brought on new challenges for those with neurological conditions. Expert neurologists from Brain and Life® Magazine answer patient and caregiver questions about staying safe during COVID-19. They cover conditions and diseases such as brain tumor, epilepsy, multiple sclerosis, migraine, and Parkinson’s disease.

The American Brain Foundation was founded to bring researchers and donors together in the fight against brain disease. Learn more about Alzheimer’s disease, traumatic brain injuries, and other brain diseases or help us in our mission by giving today.

The American Brain Foundation’s Lewy Body Dementia Fund promotes research and patient care

Lewy body dementia is a degenerative disease that causes progressive decline in cognitive function. It’s the second most common cause of dementia, after Alzheimer’s disease, but remains misunderstood. The disease is also underdiagnosed partly because there is no biomarker, or clear indicator of the presence of a disease.

American Brain Foundation’s vice chair Susan Schneider Williams knows all too well what can happen when Lewy body dementia goes undiagnosed. Her late husband, comedian Robin Williams, only got a diagnosis after he died. “I promised him that we would get to the bottom of this, and I just didn’t know that would be after he passed,” she shared with the TODAY show. After her husband’s death and armed with the name of a brain disease she never heard of before, Susan set out on a mission to understand it. This journey led her down her  unchosen path of advocacy. Over the last several years, Susan has devoted her time and efforts to raise awareness around the disease. That includes in her role as Vice Chair of the American Brain Foundation.

In her work at the Foundation, she championed the creation of the Lewy Body Dementia Fund. The fund’s goal is to help develop a diagnostic test for the disease. With this test, researchers can study it in a way that ultimately results in effective therapies.

Why Biomarkers Are Central to Research and Patient Care

A biomarker is a measurable indicator of the presence of a disease. For example, doctors can detect diabetes through the presence of elevated blood sugar levels. John Morris, MD, FAAN, who sits on the American Brain Foundation’s Research Advisory Committee and chairs the Lewy body dementia committee that oversees the fund, spoke to us about the importance of finding a biomarker. A diagnostic test for Lewy body dementia would not just enhance patient care, he says. It could also further research of the disease, which would lead to therapies.

“Without a clear and accurate way to make the diagnosis, many of these people are not recognized during life as having this specific illness,” Dr. Morris explains, “hence, they never get the treatment that they need.” Many people with Lewy body dementia are misdiagnosed or never diagnosed at all. This is because the disease is not well-known outside of dementia specialty clinics. That makes it hard for patients to get necessary care.

Dr. Morris also explains that having a satisfactory way to diagnose Lewy body dementia would allow patients with a diagnosis to participate in the research needed to better understand and treat the disease. “We have to know who truly has the disease and who doesn’t so we can study it,” he says.

Understanding One Brain Disease to Understand Many

Lewy body dementia is often misdiagnosed as Parkinson’s. In fact, both diseases share the same brain protein, alpha-synuclein, a regular brain protein that becomes abnormal. A test that could detect alpha-synuclein would enhance research across multiple disease states, as well as allow doctors to correlate biomarkers with clinical presentation to better diagnose dementing illnesses.

Dr. Morris hopes the findings from the research fund will aid our overall understanding of neurodegenerative illnesses, including Alzheimer’s. “As we study how brains work or do not work, it gives us insights not only into the clinical condition that we began to study, but in many other brain illnesses as well.” 

The American Brain Foundation was founded to bring researchers and donors together in the fight against brain disease. Learn more about brain disease or help us by giving to our Lewy Body Dementia Fund today.