Debilitating muscle weakness or fatigue can be triggered by neuroinflammation, which is the effect of the brain’s natural immune response. This response kicks in when the brain tries to fight off an infection or repair damage to the central nervous system. However, scientists have long wondered how and why this inflammation physically affects muscles elsewhere in the body. Recently, neurologists and biologists at Washington University School of Medicine in St. Louis, Missouri, discovered more about the communication between the brain and muscles, and the weakness that results from infection and chronic disease. Their research also suggests pathways for potential treatments. 

The Brain/Muscle Connection 

There are many conditions generally referred to as neuromuscular diseases—including ALS, spinal muscular atrophy, myasthenia gravis, and muscular dystrophy—that characteristically cause muscle weakness. These diseases present many serious challenges for patients, and while available treatments can often improve their quality of life, continued research is necessary to find cures. However, the type of muscle weakness discussed below is different; it is often temporary, and it is more like a side effect of separate diseases affecting the brain. 

For example, when individuals experience the effects of bacterial infection, Alzheimer’s disease, or long COVID, they may find that they do not have the energy to move their limbs as they would otherwise. One thing that all three conditions have in common is neuroinflammation, the process of the brain’s immune system attempting to neutralize a foreign pathogen or repair tissue in the brain or spinal cord. While scientists had previously recognized this connection between inflammation in the brain and muscle weakness in the body, the cause and reason for this fatigue remained unclear. A team of researchers at Washington University set out to learn about this connection, how it works, and what might be done to help patients retain their strength. 

WashU’s Study 

The researchers, led by senior author Aaron Johnson, PhD, modeled three different types of diseases to observe how brain inflammation affects muscle function. Using mice and fruit flies, they tested a bacterial infection with E. coli, an infection with the virus that causes COVID, and Alzheimer’s disease. Each of these conditions causes neuroinflammation in the brain, which then causes a buildup of chemicals called reactive oxygen species. As part of the immune process, these reactive oxygen species cause brain cells to produce a type of protein called a cytokine that helps cells to communicate with each other. The specific protein created in this response, and sent to muscles through the bloodstream, is called interleukin-6 (IL-6). The study, published in Science Immunology, found that in mice, IL-6 reduced energy production in the mitochondria of muscle cells. In fruit flies, the corresponding protein called Unpaired 3 (upd3) had the same effect. 

If someone mentions the word mitochondria, the phrase “the powerhouse of the cell” likely comes to mind, as one of the more memorable statements from high school biology. Here we have a real-world situation where that phrase applies: cells in the brain send a message to cells in muscles to reduce how much energy their mitochondria produce. There is no actual damage to the muscle fibers, but this process has a direct effect on a patient’s energy, so they feel very weak and fatigued. 

“Flies and mice that had COVID-associated proteins in the brain showed reduced motor function—the flies didn’t climb as well as they should have, and the mice didn’t run as well or as much as control mice,” Johnson said in an article for WashU Medicine. The team saw similar effects on muscle function when the flies mice brains were exposed to proteins of bacteria and the plaque that forms in the brains of Alzheimer’s patients, with the effect lasting many days even when the infection was quickly cleared. 

Conclusions 

“Our study suggests that when we get sick, messenger proteins from the brain travel through the bloodstream and reduce energy levels in skeletal muscle,” Johnson explained. “This is more than a lack of motivation to move because we don’t feel well. These processes reduce energy levels in skeletal muscle, decreasing the capacity to move and function normally.” 

Humans with Alzheimer’s, E. coli infection, and long COVID have been shown to have elevated levels of IL-6, and identifying the role of this protein in causing muscle weakness offers hope for developing potential treatments. Several FDA-approved drugs currently on the market, such as medications to treat arthritis and other inflammatory conditions, work blocking the pathway that IL-6 uses to communicate with muscle mitochondria. This suggests that there might be a way to use a similar chemical interaction to prevent or treat muscle weakness related to brain inflammation. The WashU team is currently testing neutralizing antibodies—proteins that bind to and inhibit the function of cytokines, like IL-6—in mice with neuroinflammation. 

Why does the inflamed brain send a protein signal to cause such intense muscle weakness? Johnson speculates that it could be the result of an evolutionary development to allow the human brain to reallocate resources to itself, so that it can better fight disease. But whatever the reason might be for this process, he’s hopeful that further research will illuminate more about neuroinflammation’s effect on communication between the brain and muscles, especially in conditions like long COVID. 

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

Heart health is directly related to brain health. Your brain depends on a healthy supply of blood, which your heart pumps through your circulatory system. Following sound medical advice for maintaining good circulatory health will help to reduce your risk of stroke and dementia. 

Brain Benefits

February is American Heart Month. This federal observance is intended to urge Americans to recognize the ongoing problem of cardiovascular disease and support programs to find solutions. Heart disease is a serious epidemic in the United States. It is currently the leading cause of death for American men, women, and people of most racial and ethnic groups, it accounts for about 1 in 5 deaths, at a rate of about one person every 33 seconds. However, over the past ten years, the global death rate attributed to dementias (44%) is more than double the increase in the rate for heart disease (21%) during that same time. But in many ways, these trends overlap, because heart disease can be a significant contributing factor to dementia. 

Fortunately, practicing general healthy lifestyle habits—such as eating a healthy diet, maintaining a healthy weight, getting regular cardiovascular exercise, refraining from smoking, limiting alcohol consumption, getting adequate sleep, reducing stress, and managing blood pressure—can help significantly reduce the risk of heart disease. 

Cardiovascular health also benefits the brain, where the heart pumps about 20 percent of the body’s blood supply. This blood flow delivers oxygen and other essential nutrients for cognitive functions including memory, focus, and problem-solving. In addition, maintaining good cardiovascular health through regular exercise and a balanced diet benefits the brain psychologically, releasing endorphins and serotonin. This helps to elevate mood, manage depression, reduce stress and anxiety, boost self-esteem, improve sleep quality, and promote a general sense of well-being. 

Risk of Stroke and Other Cerebrovascular Diseases

Poor heart or circulatory health puts the brain at risk in many ways, and one of the most immediate concerns is the potential for stroke. When a person experiences an ischemic stroke, it is the result of a blockage or narrowing of arteries supplying the brain. This narrowing can occur if plaque builds up over time in the walls of arteries, a condition known as atherosclerosis, often because of having high cholesterol, high blood pressure, Type 1 diabetes, obesity, or a diet in high saturated fats. (Smoking and physical inactivity can also contribute to atherosclerosis.)  

Arteries can also become clogged from concentrations of cholesterol, or from thrombosis, when clots develop in the bloodstream. Blood clots serve a helpful purpose to prevent excess external bleeding so that tissue can heal, but otherwise they can potentially reduce blood flow and cause strokes. Thrombosis can develop for many reasons, but as with other circulatory issues, obesity and smoking are risk factors. 

Other types of cerebrovascular diseases include brain aneurysm, transient ischemic attack (TIA), and several types of brain hemorrhage, also known as hemorrhagic stroke, in which the brain suffers internal bleeding. While some of these conditions might develop independently of typical risk factors, maintaining cardiovascular health will be helpful in supplying the brain with necessary blood. 

Risk of Dementia

Maintaining good cardiovascular health can also reduce the risk of dementia, including Alzheimer’s disease, developing later in life. Research and statistics are increasingly proving that heart disease and dementia are very closely related. These outcomes share many of the same risk factors, including high blood pressure, obesity, diabetes, and tobacco use, but beyond that, heart disease is itself a risk factor for dementia. In fact, the American Heart Association reported in 2022 that coronary heart disease led to 40% increased risk of dementia, cognitive impairment, or cognitive decline.  

Another recent study found that cholesterol levels have a link to dementia risk, and unexplained changes in cholesterol levels may be a warning sign of impending dementia. According to a study from Brazil, statins (a type of medication used to lower cholesterol) taken over three years led to 63% reduction in dementia risk. More research is needed to determine if statins can be used to prevent neurodegenerative disease, but this does provide further evidence that appropriately managing cholesterol levels in the bloodstream is good for long-term brain health. 

Take Heart Health Seriously

It is a human tragedy that heart disease and brain disease are so widespread. Scientists continue to search for cures for heart and brain disease, but in the meantime, there is a lot we can do on our own to reduce our risk of both.  

For many, prioritizing cerebrovascular health is not the norm, but shifting to a long-term mindset for practicing healthy habits consistently can make an enormous difference. Regardless of where you might be in life, it is never too late to focus on improving and preserving your circulatory and neurological health. 

1. Eat a heart-healthy diet, rich in fruits, vegetables, whole grains, and lean proteins. 
2. Try to get at least 30 minutes of moderate exercise five days a week. Even half an hour of walking helps improve circulation and lower high blood pressure and cholesterol.
3. Manage your stress levels. Chronic stress can cause strain on your heart and increase blood pressure, so it is helpful to explore healthy ways to reduce it, for example through regular meditation or yoga.
4. Try to get 7 to 9 hours of sleep per night.
5. Schedule regular medical checkups to monitor your blood pressure, cholesterol, and blood sugar, and get expert health advice from your care provider. 

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

The blood–brain barrier (BBB) is a crucially important defensive structure. Like a wall around a garden it protects the brain from harmful substances in the bloodstream, including most viruses, bacteria, and toxins. This barrier also helps to contain molecules to maintain the brain’s chemical balance. 

On a Cellular Level

Inside human blood vessels and lymphatic vessels, there is a layer of cells called the endothelium. The cells that make up this layer are called endothelial cells, and they function to provide a space for blood to interact with tissue, thereby helping to provide a stable state of healthy blood flow throughout the body. In fact, scientists often consider this collective layer inside all blood vessels to be one individual organ, and in that sense, it can be thought of as one of the largest organs in the human body!

Endothelial cells also exist in the blood vessels of the brain, but there they are tightly packed together—so tightly that almost nothing can slip through into the brain tissue. These cells also have a lipid-based outer membrane. Lipids are organic compounds (such as fats and oils) that do not interact with water, so this membrane naturally repels water-soluble substances. The BBB also includes cells called astrocytes and pericytes, which help regulate blood flow and provide structural support, and an underlying membrane of proteins that acts as an additional filter. Together, these components form a barrier that’s 50 to 100 times tighter than the walls of blood vessels elsewhere in the body.  

However, the BBB allows essential nutrients and gases like oxygen and carbon dioxide to pass through. In rare cases, molecules are small enough to pass between the cells, or they may be lipid-soluble, meaning they are not repelled by the BBB cell membranes. Alcohol, caffeine, and certain medications can pass through, but in most cases, substances can only cross this barrier with the help of “transportation,” or a workaround using one of a few specific molecular chemical processes. 

Risks to the Blood–Brain Barrier 

When a person experiences inflammation in a body part, that’s the process of the immune system working to fight off harmful stimuli (like an infection) and repair tissue. The area often feels warm or painful to the touch and appears red and swollen. When this inflammation occurs inside the brain, it’s referred to as neuroinflammation. This natural healing process is activated if the brain is exposed to something harmful that somehow penetrates the BBB, or if a person has brain tissue that needs to be repaired after a physical injury, such as a concussion. Mental functioning, emotions, or alertness can be temporarily affected as the immune system goes to work. 

If the immune system cannot easily solve the problem, there is a risk that the neuroinflammation can become chronic, running consistently over long periods of time to try to eliminate a threat and repair damage. If this happens, it can eventually start to damage otherwise healthy cells, including those of the BBB. This weakens the barrier, potentially disrupting the chemical balance and allowing harmful molecules, toxins, or pathogens to pass from the blood into the brain, which triggers further neuroinflammation and further cell damage. This damage can directly lead to more than 600 separate brain diseases, including dementia, Parkinson’s, MS, encephalitis, ALS, and more. 

Besides neuroinflammation, several other conditions can potentially disrupt the BBB: brain cancer, encephalitis, meningitis, concussion, traumatic brain injury (TBI), hypercapnia (too much carbon dioxide in the blood), cerebral hypoxia (when the brain doesn’t get enough oxygen), stroke, and seizures, neurogenerative diseases, chronic obstructive pulmonary disease, epilepsy, hypertension, hypoglycemia and type 2 diabetes, and others. Abuse of alcohol and harmful drugs can also cause disruptions to the BBB. 

How to Care for Your Blood–Brain Barrier 

While most situations that could compromise your BBB are out of your control, when it comes to keeping it in good shape, the best strategy is simply to maintain healthy habits. Because strokes can potentially lead to a disruption of the barrier, it’s wise to take care of your circulatory system by maintaining a healthy weight, following diet and exercise advice from a primary care provider. Make sure to talk to a doctor if you suspect you might have an eye or ear infection, as these can potentially spread and cause inflammation that could damage the BBB. Wear safety equipment such as a helmet in an area where head injuries are common, such as construction sites, and always wear a seatbelt or other safety restraints when operating or riding in a vehicle. Manage chronic health conditions like type 2 diabetes, high blood pressure, high cholesterol, and epilepsy as recommended by your doctor. Naturally, these types of precautions are helpful to practice for general health and wellness. 

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

There are more than 600 known brain diseases. Neuroinflammation plays a role in nearly all of them.

And yet, researchers still understand very little about how this common immune response contributes to the development of brain diseases and other neurologic disorders. Complex and unique changes in the body’s immune response underlie nearly every major pediatric, adult, and geriatric neurological and neuropsychiatric disorder. These include Alzheimer’s, Parkinson’s, and Huntington’s diseases, multiple sclerosis (MS), encephalitis, stroke, amyotrophic lateral sclerosis (ALS), schizophrenia, brain tumors, epilepsy, migraines, myopathy and neuropathy, meningitis, chronic pain, and brain disease associated with COVID-19. Together, these diseases affect 60% of the U.S. population and at least 3 billion people worldwide, and they attack the essence of what makes us human: thought, speech, emotion, and movement.   

What Exactly Do We Mean by “Inflammation”?

Inflammation is the immune system’s natural response to injury, illness, or infection. For example, if you get a splinter in your finger, you may experience pain, heat, redness, swelling, and irritation in the area as the immune cells do their work to neutralize harmful stimuli—such as foreign bacteria or other infection—and repair tissue. Unpleasant as it may feel at the time, inflammation is a positive healing process. 

This healing happens in the brain as well, whether triggered by a pathogen or by direct damage from a physical impact, for example a concussion or a traumatic brain injury (TBI). When tissue in the brain (or spinal cord) becomes inflamed, this is referred to as neuroinflammation. Individuals cannot see or feel the indicators of inflammation inside the brain, as they can with inflammation of the skin. Nevertheless, brain cells are directly affected during a neuroinflammatory response, and a person can experience temporary changes in mental and emotional processes—thinking, concentration, behavior, mood, fatigue, motivation, and so on. 

However, if inflammation becomes chronic, lasting or recurring for months or years, it can be a serious concern for patients. In chronic inflammation, the immune system may begin attacking healthy tissue. 

How Neuroinflammation Works

While many people think of neurons when they think of brain cells, about 70% of the cells in the central nervous system are a different type, called glial cells. Two important types of glial cells are microglia and reactive astrocytes. These cells help the brain’s immune system. Microglia act like guards, watching for signs of injury or infection. Astrocytes help control blood flow and chemical levels in the brain to create the best conditions for healing. 

If the brain’s first immune response doesn’t work—for example, if it can’t get rid of a virus, bacteria, or other threat—glial cells activate a chain of stronger immune responses. This can result in chronic neuroinflammation, meaning the immune system stays activated longer than it should. Over time, this chronic neuroinflammation can start to cause damage to healthy cells, including those of the blood-brain barrier. If the barrier is compromised, foreign pathogens that would normally be blocked can enter the brain—instigating further neuroinflammation, further interfering with brain function, and potentially causing neurodegeneration, or damage to neurons, including those associated with memory. 

Chronic Neuroinflammation, Aging, and Neurodegenerative Disorders

While neuroinflammation occurs in all stages of life, it is a cross-cutting mechanism of brain disease and the aging brain. Neuroinflammation is a crucial underlying mechanism that contributes to a wide variety of neurogenerative disorders associated with aging, such as Alzheimer’s and other types of dementia.

“Inflammation causes joints, muscles, the heart, and the brain to age,” explains Dr. David Dodick, Immediate Past Chair of the American Brain Foundation’s Board of Directors. “When the system goes awry or becomes too active, normal brain tissue becomes an innocent bystander. Think of it as ‘inflamm-aging’ — aging caused by inflammation. The connections in your brain get broken. At first you may not notice, but eventually you do.” 

Because inflammation has this aging effect on the brain, animal models and clinical trials of new therapies for neurodegenerative diseases have focused on blocking or enhancing inflammatory signal pathways among cells in the central nervous system. These experiments have shown that inflammatory signaling is extremely complex due to many variables, but there is potential for beneficial immune-directed treatments in the future. 

Researching Neuroinflammation to “Cure One, Cure Many”

Understanding neuroinflammation is important for neuroscience, the future of treatment, and our concept of how the brain ages. To date, however, there has been no large-scale, coordinated research effort to understand how neuroinflammation affects or leads to brain diseases, such as those associated with aging. This understanding—at the molecular, cellular, and systems levels—is essential to developing medical treatments that act at different points during the progression of a brain disease. 

This is why we recently launched our Cure One, Cure Many Award in Neuroinflammation, in collaboration with scientists, disease-specific organizations like the National MS Society and the Encephalitis International, and patient advocacy groups. We are on track to begin awarding millions of dollars in funding for neuroinflammation research projects in 2025. 

Humanity should not accept the status quo where so many suffer from brain diseases, injuries, and disorders with the identifiable common denominator of neuroinflammation. A profound understanding of how and when inflammation occurs in the brain and the spinal cord will aid in preventing, detecting, treating, and even curing a broad spectrum of brain diseases. 

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

We are reflecting on this year’s achievements in brain disease research, education, and awareness, all made possible by the generous support of our donors.

It’s been another year of progress at the American Brain Foundation! Thanks to the support of our donors and partners, we were able to fund important brain disease research, share educational resources and expert updates on the latest research breakthroughs, and spread awareness of the impact of brain diseases and disorders.

As we approach the end of 2024, we’re taking time to celebrate all the incredible accomplishments and research advancements from this past year that were made possible with the generosity of our donors.

Commitment to Cures 2024

Each year, we hold our Commitment to Cures fundraising gala to recognize and honor the advocates and researchers who have contributed to our vision of life without brain disease. We know their efforts have left a lasting impact on brain disease research.

483 people attended this year’s gala in Denver, Colorado. The event was emceed by Kristen Aguirre, journalist, brain health advocate, and stroke survivor. With the help of our donors, we raised $542,000 for brain disease research during the gala.

The 2024 Commitment to Cures award recipients included:

• Public Leadership in Neurology Award: Cam Heyward, Pittsburgh Steeler and 2023 Walter Payton NFL Man of the Year, was honored for his outstanding efforts to raise awareness about brain cancer and build a dedicated college scholarship fund to support families affected by brain cancer.
• Scientific Breakthrough Award: Bruce Ovbiagele, MD, MSc, MAS, MBA, MLS, has made a tremendous impact on the field of health equity and inclusion, especially in developing evidence-based behavioral interventions to improve stroke outcomes for people in underserved communities.
• Potamkin Prize for Research in Pick’s, Alzheimer’s, and Related Diseases: Francisco Lopera, MD, PhD, Universidad de Antioquia, Medellin, Colombia, made exceptional research contributions to the understanding of the causes, prevention, treatment, and cure for Pick’s, Alzheimer’s, and related diseases. Dr. Lopera, who passed away in September 2024, leaves behind a profound legacy that will continue to shape advancements and inspire breakthroughs in brain disease research.
• Sheila Essey Award: An Award for ALS Research: Eva Feldman, MD, PhD, University of Michigan / Michigan Medicine, Ann Arbor, MI, was recognized for her outstanding achievements in ALS research, including fundamental and clinical neuroscience in relation to ALS and her recent groundbreaking work on ALS epidemiology.

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

13 Next Generation Research Grants

This year, in partnership with the American Academy of Neurology, the American Brain Foundation funded 13 early-career researchers whose innovative work will lay the groundwork for future breakthroughs across the spectrum of brain disease. It’s only through the continued support of our generous donors that we’re able to fund these important research projects that will help improve brain disease diagnosis and develop new treatments and cures.

As of this year, we have granted nearly $45 million to almost 300 researchers, over 98% of whom have gone on to receive research funding from key national funders, including the National Institutes of Health (NIH).

You can learn more about this year’s grant recipients and their research projects here.

Matching Gift Through the End of 2024

Every gift, no matter how big or small, funds research to improve treatments and find cures across the spectrum of brain disease. This year, one of our donors and their family had such a strong belief in our mission that they offered a dollar-for-dollar match through the end of 2024, up to $500,000. Until then, every gift to the American Brain Foundation will be matched.

All brain diseases — like Alzheimer’s disease, epilepsy, migraine, stroke, multiple sclerosis, Parkinson’s disease, and traumatic brain injury — are connected. Research is the only way to find cures and achieve our vision of life without brain disease.

Donate by the end of the year and make twice the impact!

Education and Empowerment 

Awareness and education is a crucial part of our mission. With more knowledge, people can be stronger advocates for research and better supporters of others who are affected by brain disease. This year, the Foundation continued to host free educational webinars almost every month. These webinars provide an opportunity for people to connect with leading neurologists, experts, and researchers in the field, as well as learn about new breakthroughs and gain hope and support.

Visit our YouTube channel to view recordings of all our past webinars.

Thank You to Our Supporters

In reflecting on this year’s achievements, we know that this incredible progress is a direct result of the generous support of our donors, partners, and supporters. None of these accomplishments and ongoing research projects would be possible without funding.

These highlights also show that continued funding is necessary to keep research moving forward. With your help, we can support research that will lead to new treatments and cures for brain disease. We look forward to working together to make more progress in the year to come.

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

After losing his father to a rare neurodegenerative disease, Los Angeles-based filmmaker Alex Meader dedicated himself to raising awareness for brain health through his art and storytelling.

Alex’s story captures the profound impact his father’s illness had on his life and career. Through personal memories and insights into his creative work, Alex shares why he supports the American Brain Foundation, in hopes of inspiring others to give back and fund critical research.

Alex’s Early Inspiration and Family Influence

As a result of his parents’ own creative passions, art and storytelling were an integral part of Alex’s childhood. “My mom is very much an artist. She draws, paints, knits, sews, and weaves,” he explains. “My dad was an engineer.… He was a really empathetic human being and a very hard worker. He had a natural knack for engineering and building things.”

Alex’s father translated his skills into a successful career at K2, a ski and snowboard company, where he crafted machine designs. Outside of work, his father enjoyed nature, camping, beer-brewing, and building projects — everything from a downhill coaster car for his children to entire houses for his close friends.

Alex’s mother homeschooled him, along with his younger brother and sister, instilling in them a deep love of storytelling through books, music, and art. “Growing up, my mom used to read books out loud to us, all three of us kids, like hundreds and hundreds of hours every year,” he recalls.

While Alex had always felt drawn to music, writing, and photography, he combined those interests in college and discovered his true calling — filmmaking. His close-knit family experiences and creative background led him to pursue a life in the arts.

Losing His Father to a Rare Disease

It all started with a phone call from his mom. “She said that my dad had been having problems with an ear infection and it had really messed up his balance, but she seemed concerned,” Alex says. After visiting a neurologist, the family learned there was something more serious going on.

At first, the neurologist thought Alex’s father had a type of cerebral palsy, but with further testing, he received a diagnosis of Creutzfeldt-Jakob Disease (CJD), a rare neurodegenerative illness. “My dad was a very optimistic man. He always tried to see the bright side of things and tried to not think the worst,” Alex says. “Our whole family got scared. We were like, this is not like a passing thing. This is probably something we’re going to have to deal with in the long term. And that was really hard.”

CJD develops when proteins in the brain, known as prion proteins, misfold and accumulate in an abnormal way. The brain cannot clear the proteins, leading to a build-up of plaques and causing symptoms like problems with balance and coordination, tremor, difficulty moving and walking, cognitive issues, and dementia.

Witnessing his father’s rapid decline took a toll on Alex and his family. “It was about six months from his diagnosis to when he passed. And it was only three or four months until he was unable to really speak or move by himself,” he says. 

As the disease quickly progressed, Alex’s father experienced more cognitive issues. “He was so dependable, hardworking, and focused.… Seeing his mind slip and start to fall apart was very sobering for all of us,” he says. “You would talk to him and you weren’t really sure how much of him was there.”

There is no treatment or cure for CJD. Alex’s father ultimately entered hospice just as the COVID-19 pandemic started, which meant his mom had to care for his dad largely on her own. “She was there with him until the very end,” he says. “That’s really something that will stick with me my whole life. The kind of love that they had and the way she was there to care for him through all of that was really remarkable.”

The Power of Storytelling and Advocacy

Alex’s experience sparked his commitment to raise awareness of CJD and support brain health research. Inspired to honor his father’s legacy through his artistic work, Alex created a film about loss, resilience, and family connection.

“When I was able to put some meaning to it and find some growth, that really brought me a lot of comfort and peace,” he says. “I decided I wanted to tell a story that would help bring some peace and healing to other people who had been through the same thing.”

His film tells the story of a father-son camping trip, much like the ones Alex experienced with his dad, and takes place in a forest of very old trees, reflecting the connection between generations.

Alex’s family attended an initial rough-cut screening, which was incredibly meaningful. “Watching this film together was kind of like the memorial that we never got,” he says. “We all had a good cry. We shared stories about Dad, just talked about how much we missed him and the things that made him him.”

Following subsequent screenings, Alex had several people come up to him to share their own experiences with neurodegenerative diseases and saying goodbye to their loved ones. Online, he has received hundreds of supportive comments, reinforcing his belief in the power of storytelling to foster empathy and drive change.

“Art is the way that we share our values, what’s important to us, our feelings, and our subjective human experience with others,” he says. “I really do believe that it”s an extremely powerful force for making change in the world — maybe the most powerful force that there is for making change, because it affects people’s hearts, not just their minds.”

Why Alex Supports the American Brain Foundation

After creating the film, Alex searched for a way to broaden its impact and do good for others. He looked for organizations that focused on neurodegenerative diseases and brain health, which led him to the American Brain Foundation. “[American Brain Foundation] feels like an organization that really aligns with what I’m trying to do here — trying to spread awareness, trying to help people, trying to bring some healing,” he says.

At the time of Alex’s father’s diagnosis, there wasn’t as much research available, especially for a rare disease like CJD. He points out that there are now some early trials to explore more effective diagnosis and treatment. 

Alex hopes that funding and research can ultimately provide better diagnostics, treatments, and even cures for neurodegenerative diseases. He understands the importance of research and funding in preventing others from experiencing loss like he did.

“I would love to see a world where my friends who have lost loved ones to neurodegenerative diseases don’t have to live the same nightmare that their parents did,” he says. “I believe that someday we can find cures for most of these diseases. And I think that will be one of the greatest achievements that humans have ever created.”

Your Support Matters

Alex’s experience has driven him to support the American Brain Foundation’s mission of advancing brain disease research and encourage others to join the cause. If you’re inspired by his story, we invite you to support our mission to further brain disease research. Even small contributions can make a significant impact in the fight against brain disease, helping to fund vital research and future breakthroughs.

“Neurodegenerative diseases affect millions of people every year,” says Alex. “I think trying to help fund research, help reduce the impact of these diseases, and help the people that are living with them is one of the most noble things you can do with your time and money.”

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

Through ongoing research, we are discovering the incredible benefits of the arts on the brain across a person’s lifespan.

Our recent webinar discussed music, art, and dementia, including how music and art can benefit the brain and how caregivers can incorporate the arts into caring for their loved ones with dementia.

The webinar was hosted by Susan Schneider Williams, a fine artist, landscape painter, and advocate for brain disease research, specifically Lewy body dementia (LBD), following her husband Robin Williams’ diagnosis of LBD in autopsy.

Panelists included Daniel Potts, MD, who is a singer, author, photographer, and neurologist with the Tuscaloosa VA Medical Center; and Susan Magsamen, who is an author, the founder and executive director of the International Arts + Mind Lab Center for Applied Neuroaesthetics at Johns Hopkins University School of Medicine, and co-director of the NeuroArts Blueprint.

A Personal Connection

Both panelists opened the discussion by sharing their personal connection to dementia and how they first became interested in the link between brain disease and the arts.

Ms. Magsamen’s father died of Lewy body dementia earlier this year. “He found singing and listening to music to be very comforting to him,” she says.

She also cares for her cousin Wendy, who has frontotemporal dementia. “Wendy plays Scrabble and is obsessed with Downton Abbey, and she still can knit,” she says. “It’s really extraordinary to see the ways that aesthetic experiences and motor learning really make a difference in staying connected.”

Both of Dr. Potts’s parents had Alzheimer’s disease. His father passed away in 2007, followed by his mother in June 2024. “I never really was aware of the benefit of the arts and creativity in a medical setting until my father’s experience with Alzheimer’s disease,” says Dr. Potts, as he described his father’s time in an adult care program. “Dad really discovered that he was an artist at that program, having never painted before.”

Dr. Potts’s father’s art not only ignited his own creativity, but also piqued his interest in the benefits of art for the brain and a person’s cognitive abilities.

Creative Expression and the Brain

When it comes to creativity and its effect on the brain, “the arts” encompasses much more than visual arts like painting or drawing. It can include poetry, singing, dancing, gardening, cooking, or interacting with virtual reality. “It can be any way that you creatively express yourself,” says Ms. Magsamen. “And it’s uniquely human.”

The arts can not only impact the artist, but also any person who views or experiences it. This is especially important as caregivers, healthcare providers, and people living with dementia can all benefit from art’s powerful effects.

Ms. Magsamen spoke to how the arts can impact a person’s emotions and mood, giving it the power to lower anxiety, relieve frustration, and in some cases, allow for a reduction in the use of medication.

“We so often don’t have solutions to some of the most intractable problems like dementia,” she says. “To see the arts become a way to actually relieve symptoms and prolong cognitive gain and acuity—that’s enormously beneficial when you’re trying to stabilize someone who is losing cognitive skills.”

Science is just now starting to understand this impact, as researchers use non-invasive imaging and other biomarkers to study art and music’s effects on the brain while people are engaged in creative experiences.

Saliency and the Senses

Memories are closely connected to our senses. When we bring experiences into our bodies through the senses, we make synaptic connections that create neural pathways in the brain, which are reinforced through repetition, practice, and lived experience.

Because we are exposed to so much information every day, our brains have to be selective in what we notice, process, and respond to—and what we store in our memory. Emotional salience, this way that our brains prioritize information, makes emotional memories easier to recall than neutral ones.

“That’s what is so unique about this idea of highly personalized care for patients and people living with dementia or other kinds of neurodegenerative issues,” Ms. Magsamen explains. “[The senses] are the way that you open up these pathways, and you help to reignite pathways that may be dormant, that may be in different parts of the brain that are no longer functioning appropriately.”

For example, because of the connections between senses, emotions, and memory, we may hear a piece of music and recall our unique experiences and emotions tied to that song.

Art and Music’s Connection to Memory

As Ms. Magsamen explains, the hippocampus—which is associated with memory storage and recall—is one of the first areas of the brain that is affected by the buildup of plaques associated with dementia. But people with dementia often retain emotional connections, memories, and abilities related to art and music longer than other cognitive functions because of how they are stored in the brain. 

“The saliency [or importance] of music is first recorded in the hippocampus but then is distributed in other parts of the brain,” she says. “So when the hippocampus no longer is functioning, you can recall information from other parts of the brain—from the auditory cortex, from the default mode network, from the prefrontal cortex…. There is an awakening that happens because [music] is so emotional and meaningful to people.”

Using art and music to connect to a person’s autobiographical memory—that is, memories based on their life experiences—is important in dementia care because it taps into the person as a human being. “[Dementia care] has to be person-centered. There has to be a belief that the human being still persists,” says Dr. Potts. “We have to see that the person is there, so we can build a care plan and build an environment that is supportive of that personhood.” 

How Caregivers Can Use Music and Art 

Caregivers can use art and music in everyday interactions with loved ones who have dementia to enhance their communication and connection. Caregiving is often emotionally and physically exhausting, so being creative doesn’t need to involve doing more, just doing things differently.

“It’s really about changing your lens on the things that you’re already doing, changing your mindset, shifting like a kaleidoscope,” says Ms. Magsamen. “You move a kaleidoscope a teeny bit and the whole universe changes.”

She notes that research shows that just 15 minutes of shifting your mindset in this way can lower cortisol and open up more cognitive load. To help caregivers get more creative in everyday life, Ms. Magsamen shared four neuroaesthetic mindsets:

1. Approach any experience with curiosity. Be open to seeing and doing everyday things in a new and different way.
2. Engage in playful exploration. As a caregiver to a person with dementia, spend time doing something together without needing to finish anything. For example, start a puzzle but don’t worry about completing it.
3. Open up to sensory experiences, especially in nature. What do you feel? What do you smell? Share that with each other, and use your senses to help you feel more alive.
4. Be more intentional. Train your mind to look for “glimmers” in your day—those micro-moments that incite surprise or wonder, like noticing someone’s laughter or the way a light shines.

Dr. Potts echoes the importance of a “present moment-centered” mindset when caring for someone with dementia—something he came to learn through his own experience caring for his father. “If you bring that [mindset] into the caregiving space, it really opens a whole host of things. It’s not about any products; it’s about the process,” he says.

For caregivers, this present-focused mindset could involve playing calming music or a playlist of favorite songs, spending time in nature, creating a collage, or viewing photos with their loved one. “There are so many things we can do right there in the home,” he says. “If you look around your home, if you have the right mindset to engage somebody in creativity, there are hundreds of opportunities.”

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

New research explores how repeated exposure to blast waves can affect brain structure, cognition, and mental health.

Military activity, specifically exposure to blasts in training and combat, can have a significant impact on brain health. Ongoing research is uncovering how repeated exposure to blast waves can cause brain injuries and may be linked to cognitive decline. They can also lead to long-term effects, such as post-traumatic stress disorder (PTSD), and increased suicide rates among veterans. 

It’s important to acknowledge the significant risks that military personnel face. Along with building greater awareness of how military activity impacts the brain, we also need more research to better understand these effects and develop treatments.

Understanding the Effects of Low-Level Blast Exposure

Members of the military have an increased risk of traumatic brain injuries, or TBIs, which occur when the brain experiences sudden trauma or damage, typically from blows to the head or violent jolts. While low-level blast exposure may not always result in obvious injuries like a concussion or TBI, its impact on brain health can still be significant.

When military personnel are exposed to blast waves from nearby explosions or heavy weapon fire, it can lead to brain damage, cognitive impairment, and long-term mental health issues. Because all parts of the brain are connected, a brain injury may also increase the risk of developing brain diseases like epilepsy or chronic traumatic encephalopathy. 

How Military Activity Impacts the Brain

In the military, scientists have measured overpressure, or the force of a blast. They’ve found that it isn’t just bombs that cause overpressure. When weapons are fired, invisible blast waves move through the brains of anyone nearby, which can cause inflammation and damage brain cells and blood vessels. Repeated exposure to blast waves—even smaller ones—can cause brain changes, including structural differences and degeneration.

The military has established a threshold for how much overpressure is considered safe: four pounds per square inch, which is the level at which overpressure can burst an eardrum. But we still don’t know what effect those levels have on the brain. For now, the military is working to monitor brain changes through cognitive testing and measure exposure by putting blast gauges on members who fire heavy weapons in training.

Research on Military Brain Injuries

Ongoing research is crucial in understanding the full effects of military-related brain injuries. New studies have begun to shine a light on how military activity affects brain health. 

A recent NPR report described how the military realized soldiers’ brains had been damaged by blast waves following the wars in Iraq and Afghanistan. In 2023, the Department of Defense created a fact sheet for service members with low-level blast exposure that lists symptoms including headaches, memory problems, and decreased hand-eye coordination. 

The New York Times recently reported that a Defense Department lab found a pattern of brain damage in Navy SEALs who had died by suicide. This unusual pattern is only found in people who have had repeated exposure to blast waves. At least a dozen Navy SEALs have died by suicide in the last 10 years, but these men represent only a small fraction of the career SEALs with signs of brain injuries after years of blast exposure. Many are dealing with depression, paranoia, substance abuse, and other mental health issues.

In a Harvard study, researchers scanned the brains of 30 active-duty U.S. Special Operations Forces who had exposure to extensive blast overpressure for at least a decade. They found a link between blast exposure and alterations in brain structure and function. Detected by MRI and PET scans, the structural differences were associated with a region of the brain that connects brain network signals and regulates emotion and cognition. The study also found that the more blast exposure the men had experienced, the lower health-related quality of life they reported.

As more military members experience symptoms, these research findings help strengthen the links between blast exposure, brain damage, and the long-term impact on military members and veterans’ mental health and cognitive function.

The Importance of Continued Research

Researchers are currently exploring how to measure blast exposure and evaluate its effects on soldiers during routine training. As they learn more, the hope is to not only develop diagnostic tests and treatments for those who suffer from the long-term effects of blast waves, but also to find ways to adjust military equipment to decrease the exposure level. These insights could also help people like civilian law enforcement and SWAT teams who are exposed to similar blasts.

Greater awareness will help more service members and healthcare providers recognize the risks of blast waves, report symptoms, and work to limit exposure. As continued research provides a better understanding of the potential health effects, it will also play a critical role in developing treatments and protective measures for military personnel.

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

A recent breakthrough in Alzheimer’s research has the potential to impact future treatments.

Alzheimer’s disease is the most common cause of dementia, affecting approximately 6.5 million people in the U.S. There is no cure for this irreversible brain disease that affects memory, thinking, and the ability to complete daily tasks. 

Continued research on Alzheimer’s disease is crucial to finding methods for early detection and effective treatments. Recently, a groundbreaking research discovery highlights metabolic therapy as a potential avenue for treatment to help restore memory.

What Is Alzheimer’s Disease?

Alzheimer’s disease is a progressive neurodegenerative brain disease, which means it worsens over time. Age is the top risk factor, and the risk of developing Alzheimer’s doubles every five years after age 65. However, about 200,000 people under age 65 have early-onset Alzheimer’s.

The main symptom of Alzheimer’s is memory loss beyond what is normal with aging. This can include difficulty remembering new information or recent events, repeating questions, and forgetting important dates; problems with completing everyday tasks; misplacing items; and trouble concentrating, problem-solving, or making decisions.

As the condition progresses, people with Alzheimer’s can become confused, irritable, and suspicious. They gradually lose their independence and require an increasing level of care, ultimately becoming completely dependent on others. This progression, especially the personality changes and loss of independence, can be extremely difficult for people with Alzheimer’s as well as their families and loved ones.

Especially during Alzheimer’s Awareness Month, the American Brain Foundation is committed to sharing information about this devastating brain disease and supporting research that will help with early detection and effective treatment.

The Breakthrough Discovery

In an exciting breakthrough in Alzheimer’s research, a recent study demonstrates how a metabolic brain boost can restore memory in mice. An experimental cancer drug was administered to mice with a form of Alzheimer’s. This drug appeared to help restore the mice’s ability to learn and remember.

This breakthrough has incredible potential implications for human treatments for Alzheimer’s disease. The finding suggests that drugs that boost the brain metabolism may eventually be able to reverse some symptoms of Alzheimer’s.

Metabolic therapy would be a brand new approach to treatment. Current drugs that treat Alzheimer’s focus on removing amyloid plaques that build up in the brain. These medications slow progression of the disease, but they do not improve memory or thinking. Researchers believe metabolic treatments could someday complement the existing Alzheimer’s drugs that remove amyloid plaques.

It is also important to note the limitations of mouse models and how the findings translate to human subjects. While this discovery holds promise, we will need more research to understand how it could apply to humans.

Mechanisms Behind the Research 

This research started because of a lab experiment that did not go as planned. A research team at Stanford was studying an enzyme called IDO1 that helps keep a cell’s metabolism running properly. When they removed the enzyme from mice with a form of Alzheimer’s, instead of seeing a decline in brain metabolism as they expected, the researchers observed the opposite effect. The brains of these mice experienced a boost in metabolism and did not demonstrate the memory loss usually associated with Alzheimer’s.

With further investigation, researchers found that removing the enzyme stimulated astrocytes, cells that support neurons—the brain’s fundamental cells responsible for processing and transmitting information. In Alzheimer’s disease, increased levels of IDO1 enzymes disrupt astrocytes’ ability to support energy production in the brain, which can weaken the synaptic connections involved in memory and learning.

When the mice with Alzheimer’s received an experimental drug that blocks IDO1 enzymes, the drug stimulated the astrocytes, helping neurons get the energy they need and restoring normal brain metabolism. This finding shows that while Alzheimer’s disease involves a buildup of amyloid plaques, it also affects the brain metabolism, and those metabolic changes can be reversed.

The Importance of Continued Research

Researchers have made incredible progress in Alzheimer’s research over the past decade. While there is still much more to learn, these discoveries have created momentum in the ability to diagnose the disease and develop new treatments.

Not only are researchers gaining a better understanding of how Alzheimer’s affects the brain, but they have also made advancements in earlier diagnosis and intervention through developing more comprehensive screenings, specialized scans and blood-based biomarkers. They have discovered new treatments that help slow the cognitive decline associated with Alzheimer’s disease, including the drug lecanemab, which was granted accelerated FDA approval.

While the new metabolic approach is promising, more research is needed to translate the findings from mice to humans. This recent discovery may impact future treatments not only for Alzheimer’s but also other forms of dementia.

This type of research aligns with the American Brain Foundation’s mission and shows the importance of supporting ongoing studies. Because the brain is interconnected, when we cure one brain disease, we can cure many others. We know that research is the only way we will be able to develop more effective treatments and ultimately find a cure. 

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

Psychedelics like psilocybin are starting to enter the conversation as potential treatments for brain and mental health disorders.

Ongoing experimental research is exploring how psychedelics like psilocybin affect the brain and how they could serve as a potential treatment for brain and mental health disorders. Based on a recent study, a controlled dose of psilocybin may have therapeutic effects for relieving mental health conditions like depression, anxiety, and post-traumatic stress disorder (PTSD).

What Are Psychedelics?

Psychedelics are hallucinogenic drugs that affect a person’s mental state and can temporarily change their perceptions, sensory experiences, mood, and thought processes. There are different types of psychedelics, including psilocybin, lysergic acid diethylamide (LSD), dimethyltryptamine (DMT), ibogaine, and mescaline. People who consume psilocybin-containing mushrooms can have surreal, mind-altering experiences.

While researchers are looking at how psychedelics affect the brain, they strongly caution against self-medicating outside of the supervision of trained mental health experts. Psychedelics affect each individual differently. Because there is a risk of adverse effects, like having a negative or frightening experience while on the drug, it’s important to take psilocybin under controlled conditions.

How Do Psychedelics Impact the Brain?

Psychedelics work by disrupting the communication between networks within the brain. Some interfere with specific brain chemicals or neurotransmitters that control different functions. 

In a recent study, scientists used functional magnetic resonance imaging (fMRI) to observe the changes in a person’s brain activity before, during, and after a controlled dose of psilocybin. They found that psilocybin caused significant, widespread changes in the brain’s functional connectivity, a measure of how separate regions of the brain interact and exchange information. The changes were more than three times greater than those of the control compound. 

Psilocybin also caused brain activity to become less synchronized and led to less distinction between brain networks. Relatively stable areas of the brain were temporarily “scrambled” while taking psilocybin.

The largest changes happened in the brain’s default mode network. The default mode network relates to internal thoughts and a person’s sense of time, space, and the self. It is most active when performing passive tasks like daydreaming or mind-wandering, rather than focusing attention on external tasks. 

Study participants completed questionnaires that rated their feelings of transcendence, connectedness, and awe while using psilocybin. These reports showed the greater the functional connectivity changes, the more intense the person’s psychedelic experience.

Potential Therapeutic Effects of Psilocybin

The therapeutic effects of psilocybin appear to last long after the drug wears off and brain activity returns to “normal.” While most brain networks returned to normal within days of taking psilocybin, the reduction in functional connectivity between the default mode network and the hippocampus lasted for at least three weeks. 

These small, persistent changes to the brain circuits may mean the drug has a longer-lasting effect on a person’s perception of self in relation to the world. It could help the brain adapt to become more flexible and potentially reorganize into a healthier state.

This research offers important information about the potential use of psilocybin for therapeutic treatment. “There’s a massive effect initially, and when it’s gone, a pinpoint effect remains,” said co-senior author Nico U. F. Dosenbach, MD, PhD, a professor of neurology. “That’s exactly what you’d want to see for a potential medicine. You wouldn’t want people’s brain networks to be obliterated for days, but you also wouldn’t want everything to snap back to the way it was immediately. You want an effect that lasts long enough to make a difference.”

Research on the Therapeutic Effects

In previous decades, federal drug policy restricted research that involves psychedelics, but regulations have since loosened, sparking a growing interest in this field. The U.S. Food and Drug Administration has granted two breakthrough therapy designations for psilocybin, a process that expedites the development and review of promising drugs for serious conditions.

While this recent study shows that psychedelics may benefit people with brain or mental health disorders, it also proves that this type of research can be conducted in a safe, scientifically rigorous way and serves as guidance for future studies.

Ongoing developments will help us gain greater insight into how psychedelics work and their effects on brain function. For example, a new tool provides a rapid, noninvasive way to measure how psychedelics affect brain activity and track the processes that produce their beneficial effects.

We need more research to better understand how psychedelics affect the brain, their therapeutic effects, and potential treatment use. While it may seem odd now, this could be exactly the type of treatment that helps millions of people in the future.

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

In our recent webinar, Dr. Holler-Managan and Dr. Wilson explored the topic of childhood and autism—from diagnosis and therapeutic interventions to advocacy and adulthood.

We heard from two panel experts: Yolanda Holler-Managan, MD, associate professor of pediatrics in the practice of neurology at Northwestern University Feinberg School of Medicine; and Rujuta Wilson, MD, assistant professor of pediatric neurology and psychiatry at UCLA David Geffen School of Medicine and director of research of the UCLA University Center for Excellence in Developmental Disabilities.

They shared the importance of early diagnosis and intervention, how to advocate for individuals with autism during childhood and the transition to adulthood, and what the future holds for autism research.

Early Signs of Autism

Individuals with autism have unique strengths, challenges, and needs. The webinar discussion began with the definition of autism spectrum disorder (ASD), which refers to a number of developmental conditions. Symptoms often appear early in development, but they may not be recognized until later in childhood or even adulthood. 

A diagnosis of ASD involves two main clinical diagnostic categories.

1. Deficits in social communication and interaction, including difficulty with:
   1. Forming and maintaining relationships
   2. Understanding nonverbal communication 
   3. Social-emotional reciprocity
2. Behaviors such as:
   1. Inflexibility to changes in routine
   2. Repetitive behaviors, including repetitive movements, phrases, or use of certain objects
   3. Restricted interests in specific areas and difficulty transitioning from those interests
   4. Hypo- or hyper-sensory responsiveness, such as difficulty with loud sounds or certain textures or sensory-seeking behaviors

The American Academy of Pediatrics recommends an autism-specific screening at the 18-month-old pediatric visit. But parents may notice even earlier signs, such as not consistently responding to one’s name or a lack of consistent or appropriate eye contact.

“It’s off of those main diagnostic criteria that we make autism diagnoses. But we also think about things like expressive language level, whether or not it’s presenting with intellectual disability, and level of adaptive functioning,” says Dr. Wilson. “We recognize that autism is a very heterogeneous condition. Kids, adults, all [people] can present very, very differently.”

Dr. Holler-Managan pointed out that girls with autism can present differently than boys. Girls typically develop language earlier and are often more social than boys, so they may not present with social deficits or language delays. Girls are also more likely to “mask” or camouflage their behavior to appear neurotypical, rather than neurodivergent.

Individuals with autism have high rates of other neurodevelopmental diagnoses. For example, 30 to 50% of people with autism also have attention deficit hyperactivity disorder (ADHD). Intellectual disability, anxiety, and depression also occur at higher rates in people with autism.

Therapeutic Approaches for Children

If you suspect your child may be on the autism spectrum, the first step is to bring it up with your pediatrician. Your pediatrician can screen for deficits in your child’s behavior or development, as well as provide testing for differences in language development, motor skills, and social skills.

If your child is diagnosed with autism, support strategies and therapies can help them thrive. Studies show that children who receive interventions have great improvement in their expressive and receptive language, fine motor skills, gross motor skills, and cognitive development. 

“Early intervention does improve longer neurodevelopmental outcomes,” says Dr. Wilson. “This is really working at a time when the brain is learning a lot. The brain is taking in different things from its social environment, and those early interventions are very important for language communication development, behavioral strategies, and other adaptive function skills.”

A number of therapies have been proven effective, including applied behavioral analysis (ABA) therapy to promote adaptive function and behavioral engagement or regulation; speech therapy to help with language and communication difficulties; and occupational and physical therapy to improve coordination, balance, and adaptive functioning.

Therapies should be tailored to an individual’s needs and age, and not every type of therapy is appropriate for every person. “In talking with patients and families, and even my own experience, I think every child has to be treated differently,” says Dr. Holler-Managan. 

She noted how speech therapists can help children communicate with devices or sign language, depending on a child’s needs, while occupational therapists can provide ways to reduce or increase sensory input. “Some kids like to have more sensory input. They like to jump and they like to crash into things,” she explains. “Or they don’t like sensory input—they may need headphones or things like that to help with hearing [sensitivity] issues.”

Dr. Holler-Managan also points out that not all ABA therapy is the same. She encourages parents to see how the program is run. “The objective is not for your child to be neurotypical because they would be neurodivergent for the rest of their life… [ABA therapy] is to help them with some behaviors that may need help,” she says.

Advocating for Individuals with Autism

Advocating for your child with autism is important, especially in helping them find the right educational setting. “One of the challenges is that it is sometimes hard for parents to prove that their child may be competent,” says Dr. Holler-Managan. “Even if a child does not have language, you have to assume that they’re competent until it’s proven otherwise.”

She says difficulties can also arise because many children with autism have scattered skills, where they are competent in one area but may have a disability in another area. Parents can collaborate with their child’s educators to identify the best ways to support the child’s needs, including speech therapy, social or behavioral intervention, occupational therapy, and other accommodations. In public school settings, parents can work with the school to create an Individualized Education Program (IEP), a legal document that outlines special education services.

Both Dr. Holler-Managan and Dr. Wilson shared the value of interacting with Facebook groups, community organizations, and local families, including adults with autism. “Listening to people [with autism] who have experienced things academically, socially, behaviorally can be great… because sometimes we may assume what is best for them, and then later on we find out that it caused a lot of distress,” says Dr. Holler-Managan.

Support from others can also help you build a team and gain access to services. “What you don’t know is hard, and it’s overwhelming, particularly when you first receive a diagnosis,” says Dr. Wilson. “Access to certain providers can be hard, but getting a good team together off the bat—a pediatric neurologist, a developmental behavioral pediatrician, child psychiatrist, asking your pediatrician for that referral right away—[is important] because those individuals can help you navigate some of the resources in the community.”

Navigating the Transition to Adulthood

As a child with autism navigates the transition to adulthood, they can still qualify for resources and access support. Many individuals continue to go to school, including college and university programs for students with autism. Some schools offer programming to find a job, learn skills, and get support in the transition to college and beyond. “Once you have [autism] designated as a diagnosis, there are different things that the school can do in terms of accommodations,” says Dr. Holler-Managan.

For people who are 18 years of age and older, there are also programs to support them in living independently or within a group home, or they can attend day programs to learn specific skills. 

Though many people think of therapies as something that happens during childhood or within the public school system, Dr. Wilson points out that with a diagnosis of autism, you can be a candidate for state- or federal-funded support for a lifetime. Government-funded resources can include adult behavioral therapies, day programs, and the ability to work with a care coordinator.

The Future of Research

Right now, Dr. Wilson is excited about research that focuses on understanding the causes of autism, including its links to genetic, psychiatric, and neurodevelopmental conditions, as well as other medical conditions like cardiovascular disease and obesity, and even neurologic conditions like Alzheimer’s.

“I think the future is really bright in autism,” she says. “There is a lot that we know now that we didn’t know three years ago, five years ago, 10 years ago. I still think there’s a lot we need to learn, but there are a lot of avenues of research occurring within autism.”

Intervention research is looking at the ways different symptoms are connected and how therapy in one area may help skills in other areas. For example, early-life motor problems can be connected to language development, cognitive development, and physical and mental health.

More research will help clinicians better screen for autism and allow children to receive the appropriate therapies earlier. It will also help families and communities know how to support individuals with autism at all points in life from childhood through adulthood.

To learn more, view the full webinar, “Childhood and Autism.”

The American Brain Foundation is committed to supporting research to improve the lives of those impacted by brain disease. Join us in our mission to discover tomorrow’s innovative techniques, treatments, and cures—donate today and make a difference.

Research reveals a potential link between epilepsy and Parkinson’s disease, but more research is needed to understand the connections.

About 1% of people over age 60 have Parkinson’s disease worldwide, and about 1.2% of people in the U.S. live with epilepsy. While epilepsy and Parkinson’s disease are two distinct diseases, they also share some similarities. Research suggests that epilepsy could be a risk factor for developing Parkinson’s or could contribute to the progression of Parkinson’s disease.

Many brain diseases are interconnected, which means insights about one disease can help us better understand other related ones. At the American Brain Foundation, our “Cure One, Cure Many” approach reflects our belief that we will make a bigger impact by focusing research on these connections rather than on a single brain disease at a time.

What is Parkinson’s Disease?

Parkinson’s disease is a chronic, progressive disease in which the body doesn’t make enough dopamine, a neurotransmitter responsible for body movements. The loss of brain cells that produce dopamine leads to motor issues, such as tremors, slowed movements, and loss of balance and coordination.

The first symptom most people notice is a slight tremor in their hands. As the disease progresses, motor-related symptoms can move to other parts of the body and increase in severity, ultimately leading to a loss of functional independence. Non-motor symptoms can include sleep disturbances, anxiety and depression, and mood changes.

The risk of developing Parkinson’s increases with age. Parkinson’s affects more men than women, and people who have relatives with the disease may have an increased risk of developing it. Environmental toxins, such as prolonged exposure to pesticides, most likely also play a role.

What is Epilepsy?

Epilepsy is a seizure disorder linked to a disruption in nerve activity in the brain. There are different types of seizures associated with epilepsy. The primary symptom of epilepsy is recurring seizures with no apparent trigger. Seizures can appear as changes in sensation, emotion, or behavior, convulsions, muscle spasms, or loss of consciousness.

The causes of epilepsy include an abnormality in brain structure, an imbalance in nerve-signaling chemicals, or a change in brain cell features. These can be a result of illness or infection, brain damage, brain tumor, or abnormal brain development.

Genetics may also be a contributing factor. For the six out of 10 people with non-genetic epilepsy, the cause of the disorder is unknown, but experts believe genetics can still play a role.

Differences between Epilepsy and Parkinson’s

Parkinson’s is a progressive disease, which means over time, symptoms worsen and many people may experience periods when medication no longer controls their symptoms. In contrast, 70% of people with epilepsy can control their seizures with medication or surgical interventions. Epilepsy isn’t progressive, though repetitive uncontrolled seizures may cause brain damage.

Parkinson’s most commonly affects older people, but research has found that the disease actually begins years or even decades before motor symptoms start. About 10% of Parkinson’s cases are early onset with symptoms beginning before age 50. While epilepsy affects all ages, it is more common in children and older adults.

The diseases also have different underlying mechanisms. While both diseases are related to synapse connection issues — disruption or damage to the connection between neurons found in the brain and body — Parkinson’s is linked to a loss of dopamine, while epilepsy is associated with a disruption in electrical communication in the brain.

Similarities Between Epilepsy and Parkinson’s

In epilepsy, seizures may be the result of an increased excitability of neurons in the brain. A growing body of research is linking this excitability to clinical signs of neurodegenerative disease like Parkinson’s. 

Research suggests the possibility that epilepsy is a risk factor for Parkinson’s development or progression. Studies have found that people with epilepsy are 2.5 times more likely to be diagnosed with Parkinson’s disease than the general population.

Both diseases can lead to a decrease in independence. As the disease progresses, people with Parkinson’s may lose independence with worsening symptoms like trembling hands or limbs, difficulty walking or completing tasks, memory issues, and impaired balance and coordination. People with epilepsy may be limited in their independence or activities due to the risk of seizures.

The Importance of Research

While both diseases have treatment options, there is no cure for these diseases — just treatments for symptom management. There is still so much we don’t know about Parkinson’s, epilepsy, and the potential connections between the two diseases. 

At the American Brain Foundation, we support continued research across the whole spectrum of brain diseases. Research is the only way we will be able to learn more and uncover connections that broaden the impact of new insights. The more we know, the better we will be able to prevent, diagnose, and treat interrelated brain diseases. 

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

Learn about this year’s Next Generation Research Grant recipients and how their future discoveries will support better treatments and cures for brain diseases and disorders.

At the American Brain Foundation, rather than focus research funding on one specific brain disease, we invest in researchers across a wide range of brain diseases, disorders, and injuries. This is because we know that gaining a new understanding in one brain disease will help us better understand many others, and ultimately lead to cures for the more than 600 brain diseases, disorders, and injuries affecting billions of people worldwide. 

Funding Research While Launching The Careers Of The Next Generation Of Brain Disease Researchers

The American Brain Foundation’s Next Generation Research Grants program funds the innovative research of early-career researchers, whose work will form the basis for the next major breakthroughs across the spectrum of brain disease. These grants are awarded in partnership with the American Academy of Neurology, the world’s largest association of neurologists and neuroscience professionals. As of this year, we have granted nearly $42 million to almost 300 researchers, over 85% of whom have gone on to receive research funding from key national funders, including the National Institutes of Health (NIH). 

Every key research breakthrough is built upon the discoveries of past researchers. It is only through research that we will improve brain disease prevention and diagnosis and uncover new treatments and cures for brain diseases, disorders, and injuries. It’s only with our generous donors’ support that we can continue to fund these groundbreaking research projects each year, bringing us closer to life without brain disease. 

Read on to learn about the research projects our 2024 class of grant recipients have begun working on. 

Andrew Breithaupt, MD

Alzheimer’s and Dementia

Alzheimer’s disease is a neurodegenerative disease characterized by the progressive loss of cognitive function and memory, known as dementia. Dr. Breithaupt’s research project involves using AI and computer-based questionnaires in an audio-based format to improve dementia diagnosis and help neurologists, and even primary care providers, to diagnose dementia earlier. Earlier diagnosis can allow people to access treatments that may slow their disease course and improve their symptoms.

Ana-Lucia Garcia Guarniz, MD

Stroke

A stroke happens when the brain’s blood supply is interrupted, whether by a blood clot or bleeding in the brain. About 60% of stroke survivors go on to experience Post-Cognitive Stroke Impairment (PCSI), which increases their risk of dementia. Dr. Garcia Guarniz’s project looks at common metabolic risk factors of both stroke and dementia, which may include genetics and diet, in order to develop treatments that can lessen or prevent stroke and PCSI.

Jill Goslinga, MD

ALS

Amyotrophic lateral sclerosis (ALS) is a progressive and ultimately fatal disease where the nerve cells responsible for controlling voluntary muscles are destroyed. People with ALS rapidly lose their ability to move, swallow, and breathe. Dr. Goslinga’s study seeks to better understand how pollution affects ALS progression and whether efforts to mitigate pollution and improve air quality could also help reduce ALS risk. 

George Kannarkat, MD, PhD

Lewy Body Diseases

Lewy body diseases (LBD), which include dementia with Lewy bodies and Parkinson’s disease, may happen when specific misfolded proteins from areas of the body spread to the brain, causing neurodegeneration. Dr. Kannarkat’s research examines where these proteins, called α-synuclein, originate in the body and whether all forms of them contribute to LBD. Better understanding the mechanism behind these diseases may set the groundwork for new treatments.

Brittany Krzyzanowski, PhD

Parkinson’s Disease

Parkinson’s disease is a progressive disease in which the body does not produce enough of the neurotransmitter dopamine. This causes symptoms such as coordination loss, tremors, and slowed movement. Dr. Krzyzanowki’s project further examines the known connection between high pollution levels and Parkinson’s disease risk with a goal to better understand the link between the two, and promote steps to reduce health disparities in areas affected by high pollution levels.

Jillian McKee, MD, PhD

Epilepsy

Epilepsy, a seizure disorder, occurs due to both genetic and non-genetic causes that interrupt nerve cell activity in the brain. Dr. McKee’s work focuses on biomarkers that may inform epilepsy severity, including variants in the SYNGAP1 gene, which occur in a variety of neurological disorders. Identifying these biomarkers and whether they may have a link to a person’s response to anti-seizure medication and overall outcomes can help doctors better understand the disorder, leading to better treatments for people with epilepsy.

Francesco Michelassi, MD

Peripheral Neuropathy

Peripheral neuropathy refers to a group of disorders of the central nervous system that damage nerves and affect the way nerve cell signaling works. Peripheral neuropathy can result from other health conditions and medications, including chemotherapy, known as chemotherapy-induced peripheral neuropathy (CIPN). Dr. Michelassi’s project seeks to understand how the common chemotherapy drug Paclitaxel damages nerve cells and identify treatments that may help protect nerve cells and undo the nerve damage caused by Paclitaxel.

Malya Sahu, MD

Neurodisparities

Multiple sclerosis (MS) is a chronic disease that disrupts communication between the brain and body, resulting in issues with balance, mobility, fatigue, and weakness. Dr. Sahu’s project focuses on investigating and addressing neurodisparities in diagnosis and treatment of MS in Zambia, following recent research that suggests a much higher prevalence of MS in sub-Saharan Africa than previously identified. This essential work aims to increase understanding of the perceptions of MS and design culturally sensitive interventions to improve diagnosis and treatment.

Rowan Saloner, PhD

FTLD

Frontotemporal lobar degeneration (FTLD) refers to a group of neurodegenerative disorders including frontotemporal dementia (FTD) that affect the frontal and temporal lobes of the brain. These areas of the brain are responsible for controlling personality, behavior, and language. There is currently no reliable biomarker that doctors can test for to diagnose FTLD. Dr. Saloner’s research aims to examine a gene mutation called C9orf72 (C9) to both improve understanding of FTLD and identify possible biomarkers that can lead to improved diagnosis and treatment.

Simon Thebault, MBBCh, PhD

Multiple Sclerosis

The Epstein-Barr virus (EBV), which causes infectious mononucleosis, is one of the common viruses affecting humans. It’s also the biggest viral risk factor for multiple sclerosis (MS), a chronic and often progressive disease that damages the communication between nerve cells and the body. Dr. Thebault’s research focuses on better understanding the relationship between EBV and MS, as early research suggests a possible link between EBV activity and MS relapses and disease progression. Understanding the role EBV plays in MS may lead to treatments that reduce MS relapses by limiting EBV activity.

Eleanor Thomas, MD, PhD

ALS

Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease that causes the immune system to attack motor neurons in the brain and spinal cord responsible for voluntary movement. Recent research suggests that an improperly functioning blood-brain barrier, the protective barrier that prevents substances from entering the brain, may contribute to the development of ALS. Dr. Thomas’ research involves studying blood samples from people with ALS to examine their levels of a protein in the blood called IgM, which is associated with the protective barrier not working properly. This research aims to increase understanding of ALS progression and lead to improved treatments.

Marijne Vandebergh, PhD

ALS & Related Disorders

Frontotemporal lobar degeneration (FTLD), a group of diseases sharing similar genetic characteristics with ALS, is one of the most common causes of early-onset dementia in people younger than 65 years, and there are currently no treatments available to prevent it or slow the disease progression. Dr. Vandebergh’s research will examine why FTLD causes distinct symptoms in different people and why the age that symptoms appear varies. The work will also focus on identifying possible genetic factors and how they may contribute to FTLD, the results of which may set the foundation for treatments to slow or prevent FTLD progression.

Haopei Yang, PhD

Cognitive Aging and Age-Related Memory Loss

Most adults experience cognitive decline and memory loss as they age. However, the extent of cognitive aging and memory loss can vary widely between individuals. Dr. Yang’s project will focus on exploring why memory worsens with age by studying the memory function and visual perceptions of adults of various ages using memory tests and brain scans. Dr. Yang’s work will also explore the possible link between the protein amyloid-beta in the brain and memory loss, which may lead to better understanding and treatments for age-related memory problems.

Next Generation Research Grants: Investing in a Lifetime of Research Advances

By funding brain disease researchers early in their careers and across a wide spectrum of brain diseases, we are setting the groundwork for a lifetime of innovative research advances. This research, funded with donor support, will lead to better prevention, treatments, and cures for the billions worldwide who are impacted by brain disease.

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

Everyone can make an impact in the fight against brain disease. Inspired by the American Brain Foundation’s mission, one individual decided to make a difference with an exciting fundraiser of his own.

Ethan Heiss is no stranger to brain disease. He has several family members and friends who have been diagnosed with brain diseases and disorders, so it is a topic close to his heart. That’s why, for his 24th birthday, Ethan ran for 24 hours to raise money for brain disease research.

Although it was an ambitious endeavor, Ethan took on the physical challenge of a 24-hour run to spread awareness, support his loved ones, and raise money to fund critical brain disease research. “This might seem like a difficult undertaking, but it pales in comparison to the strength demonstrated by those living with these neurological disorders,” said Ethan.

A Birthday Fundraiser to Give Back

As Ethan’s 24th birthday approached, an idea started to formulate. “I knew I wanted to do something big, and I knew that I wanted to give back,” he shared. He started thinking about creating his own fundraiser and began researching different charities and organizations to donate to. While searching for a cause that resonated, the American Brain Foundation stood out to him. “I know a lot of people who have suffered from various brain diseases,” Ethan says. “It seems like it impacts everyone’s life across the board, especially in my community.”

Ethan has a strong personal connection to the fight against brain disease. Unfortunately, both of his paternal grandparents were diagnosed with brain diseases. His grandmother is currently battling Parkinson’s disease, and his grandfather suffered from dementia for several years before he passed away. Ethan has seen firsthand how difficult dealing with these conditions is for the diagnosed individuals and their loved ones, and recognizes that funding future research is the only way to help lessen the impact of brain disease for so many.

Running for Tomorrow’s Cures

When it came time for Ethan to decide what type of fundraiser to create, running felt like a natural fit. He grew up playing baseball and ran as a way to stay in shape. It stuck with him over the years, and he became interested in ultra running, a sport that involves going longer distances than the marathon length of 26.2 miles. Though he has over a decade of experience regularly running, Ethan hadn’t tackled any extreme distances before his fundraiser. “I’d done a marathon once before, but this was really my first big running project,” he shared. “It felt really good to attach it to a meaningful cause.”

Leading up to his event, Ethan trained by running an hour a day for four to five days each week. His family and friends were very supportive, though they couldn’t help teasing him a little bit. “[You] take some digs from some friends when you tell them, I can’t go out with you tonight because I have to wake up at six in the morning to do a run,” he joked. But Ethan’s hard work paid off. When it came time for his run, he felt prepared and excited. 

With the encouragement of his friends and family, he ended up running an impressive 79.5 miles. Nine people joined for segments of his run, he received several phone calls, and he got dozens of text messages—all of which motivated him to keep going. In the end, it was an extremely rewarding experience. “It was like everything else in the world stopped for a minute so that I could really focus on this, who I was with, and how I could do as much good as I could in that 24-hour period,” he said.

Supporting Brain Disease Research

Ethan created his fundraiser through the American Brain Foundation’s fundraising page and utilized our helpful guide. He encouraged everyone in his network to share his page, with fantastic results. “As you expand that network and really make it grow and grow, more people become aware, and more people are able to offer support,” he said.

Ethan was thrilled by the donations he received, both flat amounts and per-mile pledges. Though his goal was $1,250, he ultimately raised over $3,000 for brain disease research. Raising the money felt amazing. “It was truly a rush of emotion,” he said. “I’d love to do something like this again.”

What started as a small idea turned into a meaningful experience with a far-reaching impact. The donations he raised will go directly towards funding innovative research for brain diseases like Parkinson’s disease, dementia, and so many more. Many brain diseases are interconnected, so discoveries about one condition lead to insights for many more. That’s why supporting brain disease research will impact billions of lives worldwide.

Ethan hopes his story inspires others to start their own fundraisers. “Don’t be afraid. Get out there, share, and do what you have to do to make an impact,” said Ethan. “Don’t just be a bystander in this fight.”

The American Brain Foundation is committed to supporting research to improve the lives of those impacted by brain disease. Join us in our mission to discover tomorrow’s innovative techniques, treatments, and cures—start your own fundraiser today and make a difference.

With thought-to-speech technology, artificial intelligence has the potential to help people with brain disease who have lost the ability to communicate.

While there is a lot of discussion about how artificial intelligence (AI) can play a role in the business world, content creation, and even our daily lives, AI has also made an impact on the brain and neurology. This technology could be helpful for people with neurologic conditions that cause them to have trouble communicating.

Can AI Become Conscious?

Research regarding AI and its usage in the area of neurology is already emerging. One question that research is looking to answer is whether it is possible for AI to become “conscious” — or develop self-awareness similar to our human consciousness — and how we would know when that happens. A team of researchers, including computer scientists, neuroscientists, and philosophers, recently worked to explore this question. 

Using different theories of consciousness, the researchers developed a clear definition of “consciousness” and a checklist of 14 testable criteria to determine if an AI model is conscious. The criteria addresses different abilities of the brain, including: 

• Predictive processing: the ability to accurately predict and account for the world based on past experience
• Agency: the ability to make conscious decisions to act
• Embodiment: placing oneself in a physical space or relative to other virtual systems

At this time, the checklist serves as a starting point for conversations about what consciousness means in relation to AI models.

Brain-to-Speech Technology

While we continue to research and discuss these questions, AI models are already being used to develop technologies for the diagnosis and treatment of brain disease. AI and machine learning allows scientists to analyze large amounts of data and identify complex patterns much more quickly than human researchers. In combination with brain imaging, this capability not only helps researchers better understand the brain, but it can also aid in early detection and diagnosis of brain disease.

Most notably, AI is helping people who have lost the ability to communicate due to brain disease, allowing them to communicate again with thought-to-speech technology.

While there has been some success with generating speech from signals captured in surgically implanted electrodes or words spoken out loud, research is now looking at how to generate speech from imagined speech — when someone imagines saying something, rather than saying it out loud. Recently, research has helped develop an AI decoder that can translate brain activity into real-time streams of text using non-invasive fMRI technology.

The next step is tricky — converting brain signals into natural speech. This could involve multiple aspects of AI: After the EEG records signals created by a person’s thoughts, deep-learning tools would use a model to decode the message, and then speech synthesis technology would create the user’s voice.

In a significant step forward, a research team recently created brain-to-speech technology that recognizes and generates 12 words from imagined speech signals using non-invasive EEG. While more research is needed, these breakthroughs show promise and the potential that exists. Simpler, less invasive technologies will better enable “silent conversation” and have broader applications in daily life.

The Potential of BrainGPT

New developments in “BrainGPT” — a non-invasive “mind-reading” app — show the cutting-edge possibilities of portable EEG systems that use large language models (LLMs) to decode brain signals into readable text. 

Essentially, BrainGPT can decode someone’s thoughts before they say them. This conversion relies on algorithms that associate brain activity patterns with specific words and phrases. While people used to have to lie inside a fMRI machine to use this technology, advances in non-invasive sensor technology broaden the potential for wearable, portable systems that would increase accessibility. 

Right now, the translation accuracy score is about 40%, but given BrainGPT is in its beginning stages, it is a significant starting point. This is an incredible breakthrough for thought-to-speech technology and can have a significant positive impact for people with brain disease who have lost the ability to speak.

Importance of Research

No matter what you think of AI, this technology has a lot of potential to help people with brain disease. We have already seen how research has helped develop new AI-related technologies and make decoding less invasive, more accurate, and more real-time.

As always, we will need additional research to learn about how exactly AI can help and to make it more widely accessible. Research will also help us understand where we might want to limit the “mind-reading” technology. In the future, AI may be an important part of brain disease treatment plans, restoring people’s ability to communicate and improving their overall quality of life.

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

As a healthy woman in her early 40s, Deanna never suspected that she had a rare brain disorder. Undetected for years, she finally got a diagnosis of moyamoya disease and was able to get life-saving brain surgery.

In 2015, Deanna started experiencing troubling symptoms, including vision changes, abrupt headaches, dizziness, and memory problems. Initially, she chalked it up to the stress of being a single mom. But as her symptoms worsened over the years, she began seeing different doctors in an attempt to get a diagnosis. Unfortunately, Deanna experienced an ischemic stroke (a stroke caused by reduced blood flow to the brain) in 2018. Although she was home alone at the time, she recognized her symptoms and managed to dial 911 and get help. “I remember just saying my name, my address, and the word stroke,” recalled Deanna. 

The brain imaging taken at the hospital revealed surprising results. Upon reviewing her MRI, doctors discovered a severe blockage on the right side of Deanna’s internal carotid artery—she had no blood flow to the right side of her brain. A cerebral angiogram (a type of brain x-ray) confirmed her diagnosis of moyamoya disease. After finally getting a correct diagnosis, Deanna could get proper treatment.

This life-threatening event altered Deanna’s outlook on life. “It was an intense experience, but as we learn in life through challenges and adversity, it really shows up as a gift, and it helps you recognize a version of yourself that you never knew existed before,” she shared.

Deanna is now a passionate moyamoya advocate who educates the public about this progressive condition that restricts the blood vessels in the brain. “Unfortunately there are many cases that are misdiagnosed,” she says. That’s why Deanna pushes for more research about moyamoya and other rare brain diseases. Understanding more about brain diseases, disorders, and injuries will pave the way for better early diagnosis methods that will save lives.

Why Moyamoya Disease Is Often Misdiagnosed

Moyamoya disease is a rare progressive disorder that causes narrowing or blockage to the main blood vessels in the brain. People with the disease experience a variety of symptoms, including fainting, vision problems, headaches, speech difficulties, trouble moving, seizures, and strokes.

Because it shares many symptoms with other brain diseases and disorders, it’s commonly misdiagnosed as migraine, vasculitis, or multiple sclerosis (MS). “I encourage patients who are going through a journey with any of those diagnoses that they really challenge their doctor to make sure that they get the right medical testing,” Deanna said.

Deanna knows firsthand the importance of getting a correct diagnosis—she was misdiagnosed with vasculitis after her stroke until her MRI proved otherwise. She also experienced a severe seizure at a young age, which she now believes may have been caused by moyamoya disease.

Deanna is thankful to have received her diagnosis before anything worse happened, but she recognizes that’s not the case for many others with the disease. As a patient advocate, she has met individuals who dealt with challenging moyamoya symptoms for most of their lives, never getting effective treatment. “They are now either paralyzed or [have] suffered from major neurologic deficits because of the strokes that were misdiagnosed,” she said. Tragedies like these could be avoided with more research into moyamoya and other rare brain diseases, which could lead to better methods for early diagnosis.

Moyamoya Disease Treatment Options

There is currently no known cure for moyamoya, but it can be treated through medication and surgery. While medications don’t stop the disease from progressing, they can help manage symptoms and lower the risk of blood clots and stroke. Drugs used to treat moyamoya include aspirin, blood thinners, calcium channel blockers, and antiseizure medications.

Surgery is the only treatment that can actually change blood flow patterns in the brain. Called “bypass procedures” or “revascularization procedures,” these surgical methods either change the direction of blood flow or create new pathways for blood to bypass blocked arteries, ensuring the affected areas of the brain get enough oxygen.

After receiving her diagnosis in September 2018, Deanna underwent brain surgery two months later. She was amazed by how soon she started to feel better. “I was literally driving six weeks after my surgery. I was able to bounce back pretty quickly,” she said. While she does need to monitor her condition with yearly brain scans, Deanna has mostly returned to normal life. Her goal is for everyone with moyamoya to have the same opportunity she had to receive a correct diagnosis and life-altering treatment.

The Importance of Advocacy

Not much is known about moyamoya disease, and its cause is still unclear. It can be diagnosed at any age, and it affects women slightly more than men. Researchers believe there may be a genetic component since having a family member with the disease makes an individual more likely to have it. Although it is considered a rare disease—previous estimates said one in one million people had it—due to misdiagnosis, the actual number may be much higher. Recent research from Stanford puts that number at one in 200,000 people.

It is important for Deanna to spread awareness of moyamoya disease and support those who have it. “I’ve been such a strong advocate because these patients are suffering, their families are suffering,” she said. “These individuals are human beings that deserve a chance.” She created the social media channel Moyamoya Brave and currently serves on the board of directors for the World Moyamoya Alliance. Since she began her advocacy, Deanna has already seen a shift in awareness of the disease. “More and more neurosurgeons and neurologists are becoming trained and aware of symptoms to look out for,” she said.

Why Future Research Is Critical

Despite the progress that’s been made in recognizing moyamoya disease, much more work needs to be done. Further research is critical to unlocking the underlying mechanisms of the disease in order to slow its progression and cure it. Deanna advocates for more research about moyamoya, but also other rare brain diseases. “Finding a cure for one condition paves the way for breakthroughs in others, bringing relief and life-saving treatments to countless individuals and families,” she said. “It’s the promise of a healthier future for everyone.”

The American Brain Foundation is committed to funding life-saving brain disease research. Join us in our fight against brain diseases and disorders—donate today to make a difference.

Stress is a part of daily life, but its impact on the brain is profound and often overlooked. In our recent webinar, hosted by Dr. Phyllis Zee, experts Dr. Teshamae Monteith and Dr. Elaine Peskind explored the relationship between stress and brain health.

Dr. Monteith, associate professor of clinical neurology and the chief of the headache division at the University of Miami Miller School of Medicine, and Dr. Peskind, professor of psychiatry and behavioral science at the University of Washington in Seattle, discussed the impact of stress on brain function, the role of sleep in stress management, and how to manage the effects of stress. The discussion not only shed light on the impact of stress on brain function but also provided invaluable insights into how we can better manage and mitigate its effects on our daily lives.

The Impact of Stress on Daily Brain Function

Dr. Monteith began by defining what stress is from a biological standpoint: a protective mechanism. We all need stress; it signals to us that we may be in an uncomfortable or undesirable situation, and should take steps to remove ourselves from that situation. However, when we experience stress long-term, some of the mechanisms of stress that are supposed to be protective become harmful. 

When experiencing an acutely stressful situation, the body physically reacts to prepare to respond: increased blood flow to muscles, increased blood pressure and heart rate, decreased pain, and decreased immune response. “Those are all great in the very short run,” Dr. Peskind said. “In the long run, they’re super maladaptive [make it difficult to cope with or adjust to a situation]. So they lead to all kinds of metabolic syndrome, hypertension, and both cortisol and norepinephrine [a hormone and neurotransmitter that plays a role in the body’s stress response] have negative effects on cognitive function.”

Dr. Monteith emphasized how stress affects our brain’s ability to function effectively in daily life. When we deal with long-term stress, our brain starts functioning in a way that isn’t helpful or healthy. This constant state of alertness can impair cognitive abilities, making it harder to focus, make decisions, and regulate emotions. 

The Role of Sleep in Managing Stress

Stress doesn’t just impact how we feel day-to-day; it can also play a role in more serious neurodegenerative disorders like Alzheimer’s and others. Dr. Peskind explained that stress is closely linked to mental health conditions such as anxiety, PTSD, and depression. These conditions are often tied to dysfunctions in the body’s stress response systems. One common thread among these disorders is sleep disturbance, which further complicates how stress affects the brain, because of the glymphatic system, a waste clearance system in the brain. 

You can think of the glymphatic system as a street cleaner for your brain; it will clean out neurotoxic proteins such as amyloid and tau and alpha-synuclein (which have been shown to contribute to neurodegeneration). The glymphatic system is most active during sleep, so poor sleep quality can impact this system, leading to the accumulation of stress-related toxins in the brain. 

“Any kind of sleep disturbance will increase levels of these potentially neurotoxic proteins,” Dr. Peskind said. “In fact, it’s been shown in even young normal [people] that a single night of sleep deprivation causes detectable increase in brain amyloid on PET scanning, which is astonishing to me.” Acknowledging this link between sleep and the glymphatic system underscores the importance of prioritizing restful sleep as a key component of stress management and brain health. 

The Impact of Stress on the Brain: From PTSD to Migraine

Stress also plays a role in neurologic disorders, from PTSD to migraine.

Dr. Peskind dug into the effects of post-traumatic stress disorder (PTSD) on brain function. PTSD is a condition that develops after experiencing a severe and traumatic event, such as military combat, car accidents, or assault. One key factor that increases the risk of developing PTSD is having faced significant stressors earlier in life, including childhood trauma. PTSD is linked to changes in the brain’s stress-response systems, which usually regulates the body’s stress response. Interestingly, research has shown that cortisol levels in people with PTSD can appear normal in everyday settings but become low during stressful situations. This abnormal response contributes to the symptoms of PTSD. Additionally, PTSD is associated with heightened activity in certain brain systems, leading to increased levels of norepinephrine, a stress hormone. Treatments targeting these changes, like medications that block specific brain receptors, have shown promise in reducing symptoms like trauma-related nightmares and sleep disturbances.

Stress also plays a role in migraine. When it comes to migraine and stress, the relationship is more complex than it might seem. Research shows that while it’s hard to directly link stress to the onset of a migraine in the moment, there is a stronger connection when stress levels suddenly drop, known as “stress let down.” This drop in stress is closely tied to migraine attacks. Additionally, major stressful events and overall perceived stress are linked to more frequent migraines. People with migraine might be more sensitive to everyday stressors, especially right before an attack. Their brains process stress differently, making them more vulnerable to it. And stress can disrupt sleep, metabolism, and the immune system, which can all contribute to headaches.

Strategies for Managing Stress

It goes without saying that we could all benefit from less stress – so how do we reduce the amount of stress we feel? Dr. Monteith highlighted the importance of being aware of your stress levels, as sometimes a state of chronic or long-term stress can start to feel like the norm, and we don’t even realize we are in a stressed state. Dr. Monteith shared several practical strategies to help manage stress and protect brain health:

1. Check In with Your Body: Regularly take a moment to assess how your body feels. You can even schedule time with yourself to check in about how you are feeling.
2. Establish a Stable Routine: Consistency in daily routines, including sleep schedules and meals, can help you avoid stress.
3. Engage in De-Stress Activities: If you realize that you are stressed, you can incorporate activities that help you relax, such as deep breathing, meditation, exercise, or hobbies that bring you joy.

While these are all things we can do ourselves to try to bring down our stress levels, Dr. Peskind also added that research is just starting to be done into manipulating the glymphatic system, with the goal of prevention of neurodegenerative disorders like Alzheimer’s that are characterized by aggregation of abnormal proteins, she said. Research is looking into the possibility of increasing glymphatic system function as a preventative method for diseases from Alzheimer’s to ALS to FTD. 

Stress is so common in daily life, that we tend not to think about how it might impact us long-term. But understanding the impact that stress has on our brains and overall brain health is necessary not only to live more stress-free lives, but to protect ourselves from the negative effects chronic stress can have on us. By being aware and taking proactive steps to manage stress, we can protect our brains and improve our overall well-being.

The American Brain Foundation is committed to supporting research to improve the lives of those impacted by brain disease. Join us in our mission to discover tomorrow’s innovative techniques, treatments, and cures—donate today and make a difference.

Recently, researchers have made significant advancements in understanding the underlying mechanisms of ALS. Learn how the latest discoveries pave the way for improved diagnostic methods and treatments for this brain disease.

Once commonly known as “Lou Gehrig’s disease,” amyotrophic lateral sclerosis (ALS) is a rapidly progressing neurodegenerative disease that damages nerve cells in the brain and spinal cord responsible for controlling voluntary muscle movements. As these motor neurons deteriorate, they lose their ability to send signals to muscles, resulting in muscle twitching, weakness, and atrophy. There are two forms of ALS: hereditary (caused by a gene mutation inherited from a parent) and sporadic (in which there is no family history of the disease). Affecting about 5 in 100,000 people, ALS is considered a rare disease, and the average life expectancy is typically two to five years. 

Historically, there has been a limited understanding of how the disease works, and few effective treatment options. But the latest research is beginning to change that, providing hope for those with ALS and their loved ones.

The Latest Breakthrough ALS Study

In a new study funded by the National Institutes of Health (NIH), researchers discovered how specific genes could cause neurons to die in sporadic ALS. This is a major advancement in understanding the underlying mechanisms of the disease. Previous research has identified over a dozen genetic mutations that can cause hereditary ALS, many of which are also linked to sporadic ALS in this new study. About 90% of individuals with the disease have sporadic ALS, so this NIH study has the potential to impact even more people than advancements made in our knowledge of hereditary ALS.

In the study, scientists looked at the genetic profile of thousands of neurons in brain tissue donated by individuals with ALS and those with healthy brains. Their analysis identified certain sets of genes that indicate a higher level of risk for ALS and frontotemporal dementia (FTD). Additional experiments revealed that higher levels of these risk genes in specific cells may be linked to the toxic accumulation of protein, resulting in widespread neuron loss. This study’s exciting results reveal why some neurons are more prone to ALS, and pave the way for new therapeutic targets that could prevent or stop disease progression. And this small but promising study opens the door for more work to be done in the field of ALS research.

More Exciting ALS Advancements

Recent ALS research has yielded innovative treatment methods that may also benefit people with other brain diseases and disorders. Granted accelerated approval by the FDA last year, Tofersen (marketed as Qalsody) is a gene therapy for individuals with a type of hereditary ALS. It works by blocking the gene mutation that causes misfolded proteins to form. A global study demonstrated that Tofersen slowed disease progression for everyone in the trial and improved muscle strength for 40% of participants. Now that researchers have identified a set of genes associated with sporadic ALS, they can work on developing new gene therapies that work for that form of the disease. This can also lead to gene therapies for FTD, which has similar disease mechanisms, and other neuromuscular diseases, like SMA (spinal muscular atrophy).

Additionally, there’s been promising news about the use of biomarkers (biological indicators) to improve ALS treatment. Using a blood test, researchers identified a biomarker that predicted clinical response to Tofersen. With further research, clinicians can screen more ALS drugs using blood tests, allowing them to efficiently select the best treatment for each individual.

The Importance of More Research

Further research is key to unlocking more crucial insights about ALS. The American Brain Foundation’s Next Generation Research Grant program is funding several researchers focusing on ALS. Recipient Jill Goslinga, MD, is exploring how pollution affects ALS progression, as limited studies suggest that long-term exposure to certain pollutants may increase the risk of the disease. Another grant recipient, Eleanor Thomas, MD, PhD, is studying blood samples from people with ALS to identify important biomarkers and learn more about the breakdown of the blood-brain barrier (BBB) associated with the disease’s progression. The studies done by both Dr. Goslinga and Dr. Thomas will impact those with ALS, but may also lead to crucial insights for SMA and other neuromuscular diseases.

The American Brain Foundation also awarded Next Generation Research Grants to researchers studying FTD, which has many similarities to ALS. Recipients Marijne Vandebergh, PhD, and Rowan Saloner, PhD, both focus on frontotemporal lobar degeneration (FTLD), which is responsible for 10-20% of all dementia cases. Dr. Vandebergh is exploring why FTLD symptoms vary for different people, and why the age of onset also varies. Dr. Saloner is analyzing blood and spinal fluid samples to learn more about a gene mutation associated with FTLD to better understand the disease’s progression and identify biomarkers. Because the diseases are linked, discoveries about FTD can also lead to advancements for ALS.

Investing in Tomorrow’s Cures

ALS researchers have made great strides in recent years, uncovering critical information about how the disease forms and progresses. However, we can only discover improved preventative measures, diagnostics, and treatments through more studies. The American Brain Foundation is committed to investing in research for ALS and other brain diseases, disorders, and injuries. Because the brain is so interconnected, discoveries about one condition often lead to advancements for many others. Every study, even for rare brain diseases, has the potential to impact millions of people around the world. Investing in today’s research leads to tomorrow’s cures.

Join us in our mission to support cutting-edge brain disease research—donate today to make a difference.

Understand the differences and similarities between these two inflammatory diseases, and how it’s possible that treatments and prevention strategies that work for one could be applied to the other.

Meningitis and encephalitis both refer to inflammation affecting the central nervous system, or neuroinflammation. Meningitis causes inflammation of the protective membranes that surround the brain and spinal cord while encephalitis causes swelling of the brain itself.

Both meningitis and encephalitis result from multiple causes, including viral, bacterial, and fungal infections. They both can result in permanent and severe neurological damage and often require emergency treatment.

Research into neuroinflammation may help develop more effective treatments and strategies for prevention. A better understanding of the mechanisms of neuroinflammation may lead researchers to advancements not only for both meningitis and encephalitis but also additional brain diseases, such as Alzheimer’s disease and stroke. 

What Is Meningitis?

Meningitis is inflammation of the meninges, which are membranes that surround the brain and spinal cord. Most cases of meningitis develop from a virus, fungal infection, or bacterial infection.

Pneumococcal meningitis, a form of bacterial meningitis, is the most serious. It can result in a stroke, severe brain damage, or hearing loss. It can also spread to the blood, which can be fatal.

Meningitis typically causes flu-like symptoms that develop over one or two days. But the infection can quickly become serious, so doctors recommend seeking emergency medical care if you suspect you have meningitis. Symptoms may include a fever that develops suddenly, severe headache, vision changes, a stiff neck, nausea, and in some cases, a rash. 

Some bacterial causes of meningitis, including meningococcal meningitis, are very contagious. They tend to spread in college dormitories or other places where people live in close quarters. This type of meningitis can also cause permanent brain damage or death.

Anyone can develop meningitis. But the disease is most dangerous in infants, older adults, and people with weakened or suppressed immune systems.

What Is Encephalitis?

Encephalitis is an inflammation of the brain tissue. It can occur during or after an infection, including those transmitted by ticks and mosquitos. It can also develop if you have an autoimmune disease that causes your immune system to attack healthy brain tissue. This can sometimes be triggered by a vaccination or an infection, including the virus that causes COVID-19.

Common viral causes of encephalitis include herpes simplex virus types 1 and 2, West Nile virus, tick-borne encephalitis, and enteroviruses, which can cause mild respiratory illnesses.

Encephalitis typically causes mild flu-like symptoms, though some people experience additional symptoms or no symptoms at all. These additional symptoms can include problems with speech, vision, or hearing, stiff neck, numbness or partial paralysis, and seizures.

As symptoms can worsen rapidly, doctors recommend seeking emergency medical attention for suspected cases of encephalitis.

While encephalitis can affect anyone at any age, it is more likely to occur in people with weakened immune systems, including infants, older adults, and people taking immune-suppressing medications.

What’s the Difference Between Meningitis and Encephalitis? 

Meningitis and encephalitis affect different parts of the brain and central nervous system. Meningitis specifically affects the meninges (protective membranes around the brain and spinal cord), while encephalitis affects the brain tissue.

While both typically result from an infection, encephalitis can also result from autoimmune causes where the immune system mistakenly attacks healthy brain cells. This happens when the immune system overreacts in response to a trigger, like a tumor, or in people with certain autoimmune diseases. 

Similarities Between Meningitis and Encephalitis

Meningitis and encephalitis both cause inflammation that affects the brain and surrounding structures. While inflammation is a healthy function of the immune system’s response to a threat, too much inflammation in and around the brain can cause seizures, stroke, and other neurological issues.

They also cause similar symptoms, including flu-like symptoms, neck stiffness, and neurological symptoms, that may worsen quickly and require emergency care.

Some people may develop both viral meningitis and viral encephalitis at the same time.

Both meningitis and encephalitis can result from bacterial infections and may require antibiotics, along with other medications. The exact treatment plan depends on the cause but may include antiviral, antibacterial, or antifungal medications, and corticosteroids to reduce inflammation. Some people may require rehabilitation after the initial acute phase of the illness has passed.

Both diseases can also result in permanent neurological damage that requires long-term treatment, rehabilitation, and supportive care.

Research Efforts for Meningitis and Encephalitis

Research is currently seeking to better understand the body’s immune responses, specifically   T cells, which are a type of white blood cell that can affect the body’s inflammatory response. This may benefit researchers’ understanding of both encephalitis and meningitis, as well as other brain diseases like Alzheimer’s disease that involve inflammation in the brain.

The American Brain Foundation’s 2025 Cure One Cure Many Award in Neuroinflammation will fund collaborative research and interdisciplinary approaches to help researchers better understand neuroinflammation across various brain diseases, including meningitis and encephalitis, but also multiple sclerosis, Parkinson’s disease, Alzheimer’s disease, and stroke, among others.

Better understanding of the brain’s immune response may also help researchers determine specific proteins and genes implicated in the development of autoimmune encephalitis. 

While both meningitis and encephalitis have treatments, research will ultimately lead to even better options for prevention and treatment, and discoveries that could impact other diseases and disorders.

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

As worldwide temperatures and humidity rise, a new study reveals how climate change affects symptoms of brain disease.

When we think of climate change, we may first think of major changes in weather patterns. But did you know climate change also has an effect on brain disease?

While we have some idea of the effects, we need more research to better understand the connection between climate change and brain disease. The more research on the environmental impacts of brain disease, the more preventative measures and precautions we can take to reduce the negative effects.

How Does Climate Change Impact Brain Disease?

A new study has linked climate change to worsening symptoms of certain brain diseases. As temperatures and humidity rise, conditions such as stroke, migraine, meningitis, epilepsy, multiple sclerosis, schizophrenia, Alzheimer’s disease, and Parkinson’s can worsen.

Our brains are responsible for regulating our bodies in the face of changing environmental factors. For example, in higher temperatures and humidity, our brains trigger sweating and alert us to move to a cooler location. 

The neurons in our brain function best within a specific range of temperatures. Humans have evolved so that we are generally comfortable in temperatures between 68 and 78.8 degrees Fahrenheit (20 and 26 degrees Celsius) and 20% to 80% humidity. 

Our brains are already working toward the higher end of those ranges, and as climate change pushes temperature and humidity levels higher, our brains can have difficulty regulating our temperatures and even begin to malfunction. In fact, a classic definition of heat stroke is a core body temperature above 104 degrees Fahrenheit accompanied by cognitive dysfunction, such as confusion or trouble thinking.

Extreme temperatures, large temperature fluctuations, and weather events like heatwaves, floods, and storms can worsen neurological conditions. With rising temperatures, we see more hospital admissions for dementia, deteriorated seizure control for people with epilepsy, a higher incidence of stroke and stroke-related deaths, and worsening symptoms of multiple sclerosis.

Though some percentage of brain disease cases have a genetic component, we are still learning about other causes and risk factors. Researchers are looking at how environmental factors — such as high levels of air pollution, environmental toxins, chemicals in pesticides and industrial cleaning products, and contaminated groundwater — may impact the risk of developing certain brain diseases. These findings could help us understand how to prevent or slow the progression of brain disease by avoiding or reducing exposure to these environmental factors.

The Global Prevalence of Brain Disease

Just as climate change affects us on a global level, brain disease also has a global impact. A recent study released by The Lancet Neurology found that over 1 in 3 people are affected by neurological conditions, meaning it is now the leading cause of illness and disability worldwide. 

Based on 2021 data from the Global Burden of Disease, Injuries, and Risk Factor Study (GBD), the findings indicate a growing issue. The overall amount of disability, illness, and premature death (known as disability-adjusted life years, DALYs) caused by neurological conditions has increased by 18% since 1990.

In 2021, 3.4 billion individuals were affected by a nervous system condition — which corresponds to 43.1% of the global population — and these conditions caused 11.1 million deaths. The findings of this study show that these conditions have been under-recognized, their rates are increasing, and they are unevenly distributed geographically and socioeconomically. 

Research to Guide Our Future

The issue of climate change is daunting, and it can feel like there is not much we can do as individuals to make a difference. But we know that more research on environmental factors and how they impact brain disease is the only way we can make progress and find preventative measures. Every effort matters, and the American Brain Foundation is committed to supporting research across all areas of brain disease. 

Our Next Generation Research Grant recipient Brittany Krzyzanowski, PhD, is currently researching air pollution as a major risk factor for Parkinson’s disease. We know high levels of pollution are strongly linked to increased rates of Parkinson’s disease and other neurodegenerative diseases, but it’s not clear why. Dr. Krzyzanowski’s project will help us better understand the connection, which can lead to environmental remediation and reducing health disparities in places with high air pollution.

Jill Goslinga, MD, MPH, another Next Generation Research Grant recipient, is studying the connection between air quality and amyotrophic lateral sclerosis (ALS). Because ALS affects the respiratory system, anything that directly affects a person’s lungs, like air pollution, would make it harder to breathe and worsen symptoms. Dr. Goslinga’s research will look at wildfire smoke exposure for different populations—including those in different socioeconomic classes and geographical areas—and follow the progression of their health over time.

Research gives us insight into what can happen when our brains are pushed beyond their evolutionary boundaries and ability to adapt. While major mitigation measures have to take place at a governmental and international level, we can still make an impact on a smaller scale. We can help those impacted by brain disease become aware of environmental factors and work to reduce their risks during extreme weather events — and we can continue to fund research to support these efforts and find cures for brain diseases.

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

Big scientific breakthroughs may get all the attention, but discovering “nothing” is surprisingly important. Learn why research with results that don’t support its hypothesis has a significant impact on the field of neuroscience and how it leads to new discoveries.

Whether it’s uncovering biomarkers for brain diseases or identifying the role of protein buildup in developing Alzheimer’s disease, we often only hear about science’s most significant discoveries. But behind those important advancements are years of painstaking hard work and meticulous research that yields inconclusive or negative results.

However, without these non-detections (referred to as null results), scientific progress would stall. Though they may seem like setbacks, null results actually propel us forward, guiding future research directions and avoiding the repetition of mistakes. In the field of neuroscience and beyond, scientists agree that there is much to learn from null results.

What Are Null Results?

A null result is when an experimental outcome does not demonstrate the expected effect. It includes results that don’t match the hypothesis, are negative, contradict previous evidence, or are inconclusive. Although they can be disappointing, null results are essential components of the exploratory nature of research. Many prominent scientific breakthroughs were achieved only after decades of null results refined the experiments that ultimately led to these discoveries.

The Publication Bias

Unfortunately, there is a bias against publishing null results across all scientific fields—many publications prioritize sharing exciting, positive results instead. Media, editors, the public, and even scientists share the blame for this—after all, everyone likes to celebrate big news. However, not publishing null research findings has consequences. The efficacy of potential treatments can be overestimated, or certain features of populations with a disease might be overstated.

Failing to share null results also contributes to the “replicability crisis,” in which researchers cannot reproduce results from previous experiments. The pressure to publish positive findings can lead some scientists to prioritize publication rather than taking the time to get the most accurate results. It can also lead to an incorrect interpretation of data that cannot be replicated in future experiments.

Awareness of null results creates a fuller picture, allowing scientists to understand a particular research topic more comprehensively. However, when those results aren’t shared, some studies that get published are later found to be irreproducible. This signals that even experts in the peer review process lack all the necessary information to determine which studies are reliable.

Why It’s Vital to Publish Null Results

Burying null research is a disservice to the advancement of neurology and other fields of science. Even inconclusive results contain important knowledge that should be shared with the scientific community and beyond. When that work is not published, other researchers and funding agencies waste resources on needlessly repeating studies with minimal impact. If null research is not part of the public record, the information about that research topic is skewed. Scientists can’t accurately synthesize the available evidence to formulate better future hypotheses and experiments, unnecessarily slowing down the discovery process.

Many researchers believe that publishing null research would also improve the success rate of drug clinical trials. Across disciplines, an average of about 10% of drugs with clinical trials get approved. However, this number is even lower for neurology—data from 2011-2020 shows a success rate of about 6%. A recent clinical trial for the drug arimoclomol intended to treat ALS (amyotrophic lateral sclerosis) did not yield successful results. However, it did yield valuable data that will impact future experiments. With more complete information gleaned from null research, scientists may be able to create and select more effective drug candidates with a higher likelihood of success.

Null Results and Early-Career Researchers

It can be challenging for early-career researchers to share null results. It often feels like they’re working in a system that prioritizes publication and rewards positive results. Established researchers often feel less pressure to prove themselves through their work, whereas early-career researchers may be more concerned about whether their research is advancing their careers. But it’s vital for all researchers to share their findings, even if those findings are not an exciting breakthrough. Analyzing null results and refining future studies often leads to the next significant discovery.

The American Brain Foundation supports early-career researchers through our Next Generation Research Grants. This innovative program funds and supports investigations by the best and brightest researchers at the start of their careers. Although we encourage our recipients to try to publish their work in peer-reviewed journals regardless of results, they are not required to publish. This removes some of the pressure to get positive results that are often considered more publishable in peer-reviewed journals. Without the pressure to get positive results, they can work on important research that will build the foundation for future discoveries, regardless of outcome.

Investing in Future Research

While experiments that don’t yield the intended effect can seem disappointing, they are crucial to the scientific process. Even with null results, well-designed and executed studies play a fundamental role in shaping the next research questions to be explored. That’s why it’s essential to fund and support all types of research and encourage sharing the results indiscriminately. In neurology and other fields, null research findings have the potential to lead to tomorrow’s breakthrough diagnostic methods, treatments, and cures.

At the American Brain Foundation, we understand that each study is another integral piece of the puzzle, getting us one step closer to life without brain disease. Join us in our commitment to support life-changing brain disease research—donate today.

Ray lives each day knowing that a neurodegenerative disease like Parkinson’s is in his future. But he is determined to be part of the work toward preventive treatment.

When Ray started acting out his dreams while asleep, he was in the middle of a career transition and dealing with fallout from the 2007 financial crisis, so he chalked it up to stress. 

He suspected he had obstructive sleep apnea, which happens when the throat muscles relax and block the airway. It often causes people to jerk awake and gasp for air.

But Ray would often kick his legs and move his arms in his sleep, disturbing and even hitting his wife.

Then, while traveling for work, movement during sleep led him to throw himself into a hotel nightstand hard enough to break the skin around his sternum. That was the moment where he realized what he was experiencing wasn’t normal.

“When I really came back from that trip and went back to my primary care physician and said, ‘Look, there’s something more to this. It’s just not apnea, but I need to get checked out.’ And that’s when he referred me to a neurologist,” Ray explains.

Receiving a Diagnosis of Future Neurodegenerative Disease

The following six months of appointments and tests ended with an overnight sleep study known as a polysomnogram. After the sleep study, Ray received a diagnosis of obstructive sleep apnea. His doctor then casually mentioned that Ray also had rapid eye movement behavior sleep disorder (RBD).

RBD is a condition that causes dream enactment, resulting in undesirable and potentially dangerous movement while sleeping.

While at first, Ray’s attention was on the sleep apnea diagnosis, this second diagnosis would be the one to change the course of his life.

That’s because RBD is also a prodromal symptom, or indicator, of future neurodegenerative brain disease. As many as 76% to 81% of people with RBD go on to develop Parkinson’s disease, multiple system atrophy, or Lewy body dementia. About half develop a neurological disorder within 12 years.

Ray is sharing his story to raise awareness about prodromal symptoms of neurodegenerative disease like RBD among the general public and medical professionals. Other prodromal symptoms can include loss of smell, constipation, and lightheadedness when standing. Early identification of prodromal symptoms may potentially lead to an early diagnosis and opportunities to slow neurodegeneration.

There is currently no cure for RBD and no way to stop a neurological disorder from developing, even with an early diagnosis like Ray’s. 

“It’s hard not to think about it,” Ray says. “As I’ve gotten to understand this area and this field of study and research, I’m prepared to deal with Parkinson’s because according to the proposed biological staging or classification of Parkinson’s, I effectively do have it. It just hasn’t been recognized in the clinical setting yet.”

Ray doesn’t know when he will experience other symptoms of Parkinson’s disease, which tend to include tremor, motor-related symptoms, and mood changes. He and his wife just live each day knowing it is in their future. “The clock is ticking,” Ray says.

Adapting to Life With Rapid Eye Movement Behavior Sleep Disorder

Ray was fitted for a C-PAP machine, which he now wears overnight to help him breathe. It took him time to get used to sleeping with it. 

He takes medications for RBD to keep him from acting out his dreams. This sometimes leads to him feeling frozen and unable to react in his dreams. But, he says, at least he isn’t throwing himself out of bed.

“Some people have chosen to physically constrain themselves, or use a sleeping bag, or even in a separate room if they have a bed partner. Those are other techniques, but the majority of people, I think, find that medications are an effective way to treat the symptoms. But you still have RBD and you still would act out your dreams if those medications were discontinued,” Ray says.

Ray has also had to adapt his lifestyle. He eats small meals to not overwhelm his digestive system and worsen constipation symptoms he experiences. He has also had to shift his daily routine due to increasing fatigue. 

“I get fatigued in the afternoons in particular, so I try to focus on my most important topics of the day and activities in the mornings. I tend to nap, given the opportunity in the afternoons, and I go to bed pretty early.”

Ray and his wife have always enjoyed traveling. But the way they travel has changed to accommodate his symptoms. This includes taking things more slowly and not doing too many activities. 

“I cannot travel the way I used to 10, 20 years ago,” Ray says. He schedules time to relax and nap while away and has to make a plan to account for time changes and changes to his circadian rhythm, which can negatively affect his sleep.

“Now I have to really plan my daily activities and be careful not to over schedule myself and to give myself breaks and be very cautious of what I eat,” Ray says.

But perhaps the greatest challenge Ray has had to adapt to has been the emotional impact of brain disease, and the awareness that he will one day develop a neurodegenerative disease.

A life-changing diagnosis like Ray’s also changes the way you think about and plan for the future. For Ray, there is still a lot of uncertainty.

“It’s just a matter of how fast these conditions develop,” he says. “We have prepared our lives for this when we moved to be closer to one of our children that was having children of their own. We chose to move into a townhouse instead of a house. We’re just trying to simplify our lives and slow down and accommodate the aches and pains.”

Making a Difference Through Research

Ray began participating in clinical trials soon after his diagnosis. He hopes his participation can help researchers unlock a way to prevent future neurodegenerative disease, for him and many others.

Ray has already participated in “about a dozen” trials that typically involve a neurological evaluation in addition to providing samples of his blood and cerebral fluid through a spinal tap. He has even been added to a registry of patients who are ready to participate in a clinical trial for preventive treatment, once a potential treatment is ready for a human trial.

But so far, he’s still waiting for that call.

For now, he hopes for global collaboration to find ways to prevent and cure neurological disease for the sake of his own future and that of others affected by RBD. He hopes that this collaboration will lead to “significant breakthroughs to identify these diseases early on, to stop and slow them down, or even to avoid them altogether.”

Research into neurodegenerative brain diseases and disorders, their causes, and the connections between them can help find a cure for people like Ray. When we invest in research into one brain disease, researchers will uncover insights that will help develop treatments and cures for many others. 

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

Brain cancer can affect anyone. “Scary Mommy” creator Jill Smokler and “Confessions of a Shopaholic” author Sophie Kinsella share their recent diagnoses with the aggressive brain cancer glioblastoma.

In April 2024, “Scary Mommy” creator Jill Smokler was rushed to the hospital after a sudden first-time seizure. She was diagnosed with a brain tumor, which a surgeon then removed during emergency surgery. Immediately after waking from surgery, Jill not only thought she was 20 years in the past but also didn’t recognize her children.

“I am definitely grateful that I don’t remember the looks on their faces when I didn’t recognize them,” she says. “That must have been gutting.” While she was still disoriented, a doctor explained what had happened. “I was like, ‘That’s so me to get a brain tumor.’ I always do things dramatically,” Jill says.

In these types of cases, while doctors may suspect an aggressive brain cancer from imaging results and during surgery, the diagnosis doesn’t come until the pathology report returns from the lab, which may be weeks later. 

After her pathology came back, Jill received her diagnosis: Glioblastoma multiforme, the most common and aggressive primary malignant brain tumor, the most deadly, and one for which there is no cure.

Jill isn’t the only person in the public eye to share a recent glioblastoma diagnosis. Author of the “Confessions of a Shopaholic” series Sophie Kinsella received a glioblastoma diagnosis in 2022 and has been undergoing treatment ever since.

“At the moment all is stable,” Sophie Kinsella shared to X in April. She waited to share her health news until she and her family had time to process it in privacy.

Sophie Kinsella notes that she is experiencing fatigue and memory issues but is otherwise well.

Glioblastoma Treatment and Outlook

Glioblastoma starts in brain cells called glial cells and spreads throughout the brain where it overtakes healthy brain tissue, causing symptoms like seizures and headaches. Depending on the location of the tumor, a person may also experience vision and mood changes, difficulties with movement, and have trouble speaking or understanding speech.

Treatment traditionally involves surgery to remove as much of the tumor as possible, followed by radiation and oral chemotherapy. In addition to the recovery from brain surgery, the treatment comes with its own set of side effects, including memory changes and fatigue. This first line therapy for glioblastoma has not changed since 2005.

And despite treatment, glioblastoma usually returns and develops resistance to available treatment. Though some people may live longer, the median survival after diagnosis is only 15 months. Only 7.2% of people are alive five years after their diagnosis and only 1% live 10 years after diagnosis.

Jill Smokler says that her treatment plan is all about “buying time.”

“All I want to do is spend time with my kids, ideally on a beach because that’s my happy place,” Smokler adds. “It’s so ridiculously bittersweet — I am trying to focus on the sweet part.”

The Power of Research in Advancing Treatment

Clinical trials to find alternative treatment options for glioblastoma are ongoing, with some promising advances. 

Researchers are currently looking into immunotherapy and personalized vaccines, which train the body’s immune system to attack the cancer cells, targeted treatments and inhibitors that prevent the cancerous cells from growing for a time, and chimeric antigen receptor (CAR) T-cell therapy, which involves using genetically modified immune T-cells to target cancer cells. 

But, so far, these studies have not led to a significant increase in life expectancy for people with glioblastoma.

Research into treatment for glioblastoma also unlocks treatments for other brain cancers that have no cure, including other forms of glioma, such as astrocytoma and diffuse intrinsic pontine glioma (DIPG) or pons glioma, a fast-growing brain tumor that starts in a part of the brainstem and typically affects children. Doctors treat some types of brain cancer with the same chemotherapy drugs.

People with brain cancer may undergo multiple surgeries and rounds of chemotherapy and radiation. But there typically comes a point where these treatments are no longer effective and have more risks than benefits.

Despite this, Jill Smokler is staying hopeful and focusing on the positive.

“I’m on a younger end of the spectrum and I’m otherwise relatively healthy,” she says. “Things look optimistic.”

Younger age and better overall health are associated with longer survival. Other factors that impact a person’s prognosis include certain cellular markers in the tumor itself and how well it responds to treatment.

For people who have these tumors like Jill Smokler and Sophie Kinsella, a longer survival can mean a greater chance of living long enough for additional treatment options down the road to become available.

Funding research into glioblastoma and other brain cancers is the only way we will discover additional treatment options and give people like Jill, Sophie, and their families —- who are living with these brain diseases right now — hope for the future. 

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