Meet three researchers who are giving back to brain disease research

Supporting early career researchers and their innovative work is a gift that keeps on giving. Our unique partnership with the American Academy of Neurology allows us to tap into the largest brain trust of neurologists and brain disease researchers in the world to support research projects through the Next Generation Research Grants program. Not only do these American Brain Foundation-funded grants result in breakthroughs in the way we understand the brain, but they also recruit the best and brightest researchers to work on early diagnoses, treatments and cures for brain disease and further advance the field.

To celebrate the 27th year of the Next Generation Research Grant Program, we share the stories of three alumni who have progressed from being early-career researchers to mentoring other researchers in the field.

Shafali Jeste, MD, FAAN: Stopping Autism Before It Starts

When Dr. Jeste entered medical school, autism was being diagnosed at higher rates but physicians couldn’t tell parents why. She formulated questions about how genetic syndromes such as tuberous sclerosis complex (TSC) had strong links to autism. “We could diagnose babies with tuberous sclerosis complex before birth with ultrasound,” says Dr. Jeste, “but we knew nothing about their early brain development and the high risks of developing autism.”

During her residency, Dr. Jeste received a Next Generation Research Grant to understand early brain development in babies with TSC. At UCLA, Dr. Jeste followed up this initial investigation with a larger multi-site study that identified an early predictor of autism for babies with TSC. These findings led to the first multimillion-dollar, multisite clinical trial looking at early interventions for autism.

“The Foundation holds a very special place in my heart because I would say actually that the American Brain Foundation and American Academy of Neurology were what really launched my career,” she says. Dr. Jeste is now an associate professor in psychiatry, pediatrics, and neurology at UCLA and serves as an officer on the Foundation’s board to help other researchers unlock the mysteries of the brain.

Chadwick Hales, MD, PhD: From Alzheimer’s Research to Broad-based Application

In 2009, Dr. Hales received a research grant from the American Brain Foundation to study electrical activity in neurons with Alzheimer’s disease. “The goal was to really try to understand different pathologies, such as changes that occur in Alzheimer’s disease,” he says, “and then use that as a way to potentially develop therapeutics.”

More than 10 years later, the initial research has grown from “a pie in the sky idea” that focused on an Alzheimer’s question, to laying the foundation for understanding other disorders like ALS and frontotemporal dementia. “That’s why this investment and these awards [are] so important, because even though it’s one little piece, it can have broad-based applications, especially if you hit on one of those areas that makes a huge difference for patients,” says Dr. Hales.

A few years after he received the grant, Dr. Hales was approached to be part of the AAN Research Program Subcommittee. “Of course I couldn’t say no because I’m really interested in passing it on and training that next generation.” As part of the committee, Dr. Hales reviews research proposals to ensure that the best and brightest early career scientific investigators can pursue their innovative research and advance the field.

Merit Cudkowicz, MD: Supporting Research, Paying It Forward

Dr. Cudkowicz, chair of neurology at Massachusetts General Hospital and celebrated ALS researcher, credits the Next Generation Research Grant program with helping her bring new treatments forward to help patients. “I still remember the day that I got the American Brain Foundation award in 1996,” she says. As an awardee, she had the opportunity to meet members of the advisory and review committees and talk one-on-one with these leaders in neuroscience.

“Not only did the grant help launch my career—it was one of my first grants ever—but meeting all those people was phenomenal because they became mentors,” she says.

Now, Dr. Cudkowicz serves as a member of the American Brain Foundation’s Research Advisory Committee, providing the same mentorship that she once received. “It is an honor to be part of the American Brain Foundation and to give back and support young investigators excited about research careers in neurology.”

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

Shafali Jeste, MD, FAAN, shares COVID-19 considerations for caregivers and healthcare providers of those with neurodevelopmental disabilities

Shafali Jeste, MD, FAAN, hosted a Facebook Live with the American Brain Foundation where she discussed guidelines for those living with neurodevelopmental disabilities during the COVID-19 pandemic. Dr. Jeste is a pediatric neurologist and an associate professor of Psychiatry, Pediatrics and Neurology at the David Geffen School of Medicine at UCLA who also serves as a member of the American Brain Foundation’s board of directors and as a director of CARING, a multidisciplinary clinical research program. In her Facebook Live, Dr. Jeste discusses COVID-19 considerations for children with neurodevelopmental disabilities, including risk factors and signs of infection as well as important resources and advice for caregivers and healthcare providers.

What Are Neurodevelopmental Disabilities?

Neurodevelopmental disabilities refer to impairments in physical, learning, language or behavior areas that begin during an individual’s early neurodevelopmental period. According to Dr. Jeste, these conditions, which include autism, intellectual disability, global neurodevelopmental disability and ADHD, emerge early but affect patients for their entire lives. As a result, individuals with neurodevelopmental disabilities often need help and support beginning in childhood and through to adulthood. This may include services such as speech therapy, physical therapy and occupational therapy in addition to educational supports.

Neurodevelopmental Disabilities and COVID-19

Dr. Jeste notes that those with neurodevelopmental disabilities are not at an elevated risk for COVID-19 infection. However, she explains, “because of the fact that they have other challenges, if they do get sick with COVID or any other viral illness, they are at more risk for getting sicker in other areas as well.”

People with neurodevelopmental disabilities often have coexisting conditions. These illnesses may cause additional stress to the body and further compound health issues. Those with epilepsy, for instance, may experience a worsening of seizures with illness or fever. Other individuals with neurodevelopmental disabilities may have significant motor delays or low muscle tone, which can lead to difficulty recovering from simple respiratory infections or with breathing, especially at night, affecting the quality of their sleep.

Because some people with neurodevelopmental disabilities may be nonverbal or have severe cognitive challenges, they may not be able to communicate their symptoms or discomfort. Dr. Jeste cautions parents and caregivers to be vigilant in watching out for signs of illness. She explains that in those with neurodevelopmental disabilities, sickness can manifest in other ways: from being less alert or less coherent than normal to sleeping poorly or having a poor appetite to a worsening of other conditions such as seizures.

Unintended Consequences

Dr. Jeste explains that due to the national health crisis and the safety restrictions in place, many people with neurodevelopmental disabilities have struggled to access educational and interventional services—such as speech therapy, physical therapy and occupational therapy—that they received on a day-to-day basis in school. To illustrate the impact of these restrictions on the families of children or adults with severe neurodevelopmental disabilities, Dr. Jeste reviews the preliminary results of a survey conducted through CARING.

The survey found that more than 90% of respondents had lost access to some kind of non-educational or healthcare service, with some families struggling to access medical providers they used to see regularly. Responding parents also missed the one-on-one service providers who previously administered their services directly in the home. While it is hard to find a substitute for these therapy sessions in the COVID-19 era, Dr. Jeste remarks that this speaks to their importance.

On a positive note, families also reported on the benefits of telehealth. Many families wanted more access to therapy and healthcare services provided remotely. Parents also reported that they have enjoyed seeing more of their child’s therapy services firsthand by accompanying them during telehealth visits and being part of the process.

Advice for Healthcare Providers

Dr. Jeste urges physicians to provide as much guidance to parents as they can. She notes that even a short 10-minute session can be helpful. Most importantly, healthcare providers should “Keep lines of communication open with families.” She also explains that many families have struggled to refill prescriptions, especially in places where staff is out of the office, and that when possible, parents shouldn’t have to get refills every month. “Making that medication management piece as easy as possible is important,” she says.

Additionally, Dr. Jeste tells healthcare providers to encourage families and boost their confidence during this time. “We’re a team taking care of our families,” she explains. “They’re at the center of the child’s world right now.” While this can be overwhelming, healthcare providers should applaud parents on the good job they’re doing and be a source of guidance and motivation.

Advice for Families

For caregivers of those with neurodevelopmental disabilities, Dr. Jeste advocates the practice of self-care, referencing being on an airplane and putting on your own oxygen mask before helping others. “Do what you need to take care of yourself,” she says. “If you’re not eating well, trying to exercise or sleeping well, it will be harder to take care of your child.” She encourages families to take breaks when they need them.

Dr. Jeste also advises families that maintaining a routine at home helps establish a sense of structure. This can be especially helpful in the first few hours of the morning and the last few hours before bed. In school, the educational experiences of those with neurodevelopmental delays are built around a structured environment. For those with autism especially, a visual schedule may help them anticipate what’s coming. Such a schedule can also mitigate behavior challenges and tantrums. By bookending the day with a morning and before-bed routine, caregivers can help their child sleep better, and “if we sleep well, we feel better during the day,” Dr. Jeste explains. She also cautions parents to stick to their child’s medication routine even though they are not in school.

Telehealth and Its Benefits

When working with telehealth service providers such as therapists, Dr. Jeste encourages parents to first have a 10-minute session with the provider to ask how to help facilitate the experience. That can mean sitting at the child’s side to help. It could also mean setting them up in a room without distractions or reinforcing the material covered in the session. It all depends on the child’s needs and the materials the service provider is covering.

Dr. Jeste does not believe children will regress though she acknowledges some areas may not develop as quickly with less support. But she says this will pass. “We will figure out how to support them better, even remotely,” Dr. Jeste says.

She also acknowledges that parents, healthcare providers and therapy providers cannot recreate the educational experience and resources of school but says that’s okay. For colleagues, trainees, parents and patients, Dr. Jeste explains, “We all have to manage our expectations. We need to give ourselves a pat on the back for those small victories that we do have during the day.” She also asks families to be sure to try and enjoy the time they have at home with their child or adult with neurodevelopmental disability.

Online Resources for Support and Tele-interventions

Dr. Jeste also shares resources for those providing care for individuals with neurodevelopmental disabilities during the COVID-19 pandemic. She highlights the UCLA Center for Autism Research and Treatment, which offers parents support on establishing routines at home as well as managing expectations and challenging behaviors, in addition to a wealth of other valuable information for families of those with neurodevelopmental disorders. She also recommends the Autism Science Foundation, which gives information for parents, physicians and researchers that includes educational materials, toolkits and training materials.

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

Ron Petersen, MD, PhD, FAAN, explains the impact of COVID-19 on Alzheimer’s disease patients

Ron Petersen, MD, PhD, FAAN, Professor at the Mayo Clinic College of Medicine, Behavioral Neurologist and Director of the Mayo Clinic Alzheimer’s Disease Research Center, hosted a Facebook Live with the American Brain Foundation to speak about COVID-19 and its impact on those with Alzheimer’s disease. From risk factors and preventive measures to suggestions for explaining the pandemic to loved ones with Alzheimer’s disease, watch Dr. Petersen’s video to learn more about Alzheimer’s and COVID-19.

COVID-19 Impact and Risk Factors

To understand the risk factors of COVID-19 for those with Alzheimer’s, it’s important to understand that Alzheimer’s is a degenerative disease of the brain. It’s also the most common cause of dementia for individuals in their 70s and 80s. According to Dr. Petersen, “There is nothing in the biology of Alzheimer’s itself that would make a person more susceptible to COVID-19.” However, he explains, patients diagnosed with Alzheimer’s are likely older and at greater risk for complications just by virtue of age. In addition, these patients may have other conditions such as heart disease. They may also have an immune system that is not as efficient at fighting off infection.

Dr. Petersen notes that the impact of COVID-19 infection on a patient with Alzheimer’s depends on the patient’s stage in progression of the disease. However, regardless of stage, it complicates life for someone already experiencing cognitive impairment.

Preventive Measures for Caregivers and Patients with Alzheimer’s

When it comes to preventing COVID-19 infection in individuals with Alzheimer’s, the responsibility lies with the caregiver(s). All caregivers who live in the home, including family members, should follow protective measures such as frequent handwashing, keeping social distance and wearing a mask to minimize risk to the household.

If one or more caregivers enter the home from elsewhere, it is appropriate to follow the typical COVID-19 questioning. Ask if they are well, had any symptoms, or been exposed to someone who might be carrying the COVID-19 virus. These caregivers should follow the recommendations and practice social distancing to the best of their abilities, though Dr. Petersen says it may be difficult as they must provide care to the person with Alzheimer’s. He proposes that these at-home caregivers wear gloves.

Dr. Petersen acknowledges that it may be difficult to share these recommendations with patients with cognitive impairment due to their Alzheimer’s. He recommends putting visual reminders around the home to help them follow some of these procedures, such as washing hands carefully. People with Alzheimer’s may not understand the totality of the situation because of the effects it has on their cognition. But they may be able to contribute to preventive actions.

In addition, Dr. Petersen notes that for those with Alzheimer’s, wearing masks may result in trouble communicating for some patients because the mask may hide speech, make speech more unintelligible or limit vision. Social distancing from family may also pose a problem when it comes to mental health and happiness. He advocates the use of technology, including video and phone calls, to provide comfort to the person with Alzheimer’s and allow them to remain connected to their family members.

Considerations for At-Home Caregivers

Dr. Petersen emphasizes the importance of the health and wellbeing of the caregiver. Many caregivers who also live in the home have 24/7 responsibility. “If the caregiver becomes ill, if the caregiver develops COVID-19 or another other medical problem, then the whole system breaks down. So, it’s a good idea to have a backup plan,” he says.

Another important consideration is how to talk with the person with Alzheimer’s about COVID-19 if they notice and ask about the changes in routine or safety protocols. He suggests responding with, “Don’t worry about it. We’re trying to prevent any kind of infection. We want you to remain well.” However, if the patient can understand the situation, a caregiver might explain further, “There is a pandemic affecting people around the world, and we want to keep you safe.”

Finally, caregivers in the home should remember that if the patient gets a fever or other symptoms, they may not be able to verbalize their experience. Dr. Petersen recommends looking out for any COVID-19 symptoms as well as cognitive and behavioral changes that may indicate infection.

Considerations for Congregate Living Facilities

If the person with Alzheimer’s lives in a nursing home, prevention and risk management become more complicated. Dr. Petersen acknowledges that distancing between staff and residents may be a problem as the workers must care for the residents of the facility and cannot always maintain distance.

He provides a list of questions that loved ones should ask of a care facility where a loved one is staying or where they are thinking of sending a loved one:

• What happens when someone has COVID? Is there an isolation wing?
• Do workers get daily temperature checks? If they’re exposed in their external world, are they required to quarantine themselves? What if someone works at more than one facility?
• Are residents suspected of infection quarantined at the facility?
• Is there adequate PPE for the individuals working with residents?

Another issue that people with Alzheimer’s may experience in a care facility results from the necessary limits to visitors. Patients, especially those with a cognitive disability, may become distraught or depressed. Thus they may not understand the reasons they are unable to see their spouse, children or grandchildren. Dr. Petersen notes that celebrations outside the windows of nursing homes may provide some comfort as a temporary solution, along with the use of technology for video calls when staff support is available for assistance. For individuals whose remote memories are relatively preserved, Dr. Petersen recommends bringing out photographs of their younger selves and music from their youth as this may be calming for patients and also help them relate to family members in a helpful way.

COVID-19 Infection

If someone with Alzheimer’s becomes infected with COVID-19, Dr. Petersen bringing them to a healthcare provider. Caregivers may consult healthcare providers consulted through a video visit initially. However, Dr. Petersen says not to hesitate before taking them to the emergency room if needed. Most care facilities have protocols in place for what to do in the event that they suspect a patient has COVID-19.

Dr. Petersen reminds viewers, “We have to use the same kinds of precautions we are using in our everyday lives. No public gatherings, keeping the distance, hand washing, personal hygiene, and wearing a mask if at all appropriate are probably the best measures we can take to try to prevent developing COVID infection in ourselves and in our loved ones.” He says caregivers should take steps to maintain the utmost quality of life for the person with Alzheimer’s, and that the measures taken should be individualized based on the progression of the disease.

The American Brain Foundation was founded to bring researchers and donors together in the fight against brain disease. We believe that when we cure one disease, we will cure many. Learn more about Alzheimer’s disease, dementia and other brain diseases or help us in our mission by giving today. For more timely resources on COVID-19 and its impact on brain diseases, visit the AAN COVID Resource Center.

The latest news on brain health featuring stories of hope and strength

In this month’s brain disease news round-up, we meet several individuals and organizations dedicated to improving the lives of others with brain disease. Read on to learn more about the new Robin Williams documentary “Robin’s Wish,” Emilia Clarke’s brain injury advocacy efforts and how the pandemic is affecting those with Alzheimer’s disease.

“Robin’s Wish” honors late comedian’s legacy, shines light on Lewy body dementia

To celebrate the launch of “Robin’s Wish,” American Brain Foundation’s vice chair Susan Schneider Williams appeared on the TODAY show. She talked about her late husband Robin Williams’ fight with Lewy body dementia and the struggle to reach a diagnosis. “Robin and I knew there was so much more going on. Robin was right when he said to me, ‘I just want to reboot my brain,’” she shared. “In that moment, I promised him that we would get to the bottom of this and I just didn’t know that would be after he passed.” Schneider Williams, a fine artist and advocate, hopes that “Robin’s Wish,” a documentary dedicated to her husband’s life and legacy, shines a light on brain disease. Watch Schneider Williams and filmmaker Tylor Norwood discuss the film in this exclusive webinar.

Emilia Clarke Works to End Stigma Around Brain Injury

In the August/September 2020 issue of the American Academy of Neurology’s Brain & Life® Magazine, actor Emilia Clarke shares her experience overcoming two brain aneurysms during her time portraying Daenerys Targaryen on HBO’s Game of Thrones. Because of her brain disease journey, Clarke created a charity called SameYou.  The charity promotes brain injury recovery awareness, advances nursing education to provide better care, and funds clinical research. Because her efforts, Clarke received the 2020 Public Leadership in Neurology Award at the American Brain Foundation’s 2020 Commitment to Cures event in recognition of her work in neurorehabilitation advocacy.

The Impact of COVID-19 and the Global Pandemic on Alzheimer’s Research, Long-Term Care and the Brain

Those with Alzheimer’s disease face new challenges caused by the COVID-19 pandemic. These problems include a crisis in long-term care facilities due to a lack of transparency and access to testing. The Alzheimer’s Association announced a new study to track and understand the long-term impact of coronavirus exposure on the brain. The study will include scientists from more than 30 countries and assistance from the World Health Organization. With these combined efforts, the study hopes to see how COVID-19 affects cognition, behavior, and function of the brain.

Former recipients discuss the importance of the Next Generation Research Grants

The Next Generation Research Grants program demonstrates the American Brain Foundation’s mission of bringing researchers and donors together to fund brain disease research. The Foundation partners with the American Academy of Neurology among others to invest in new generations of clinical neuroscientists. They also seek to advance innovative research projects for prevention, improved treatments, and cures for brain diseases and disorders.

The Foundation recently sat down with two former recipients of Next Generation Research Grants to learn more about its impact. One is Merit Cudkowicz, MD, chief of Neurology at Massachusetts General Hospital. The other is Chadwick Hales, MD, PhD, assistant professor at Emory University School of Medicine.

The Importance of Next Generation Research Grants

Since its founding, the Next Generation Research Grants program has supported over 250 researchers. Of these, 88% have gone on to receive additional national funding. The Foundation is currently funding 28 active research projects in 12 different disease areas.

“I can speak personally to how [the Next Generation Research Grant program] has made a difference for different areas of neurology,” says Dr. Cudkowicz, “this is a way to grow new investigators in areas that perhaps didn’t have enough scientists studying [them], to attract young people into an area of critical need for new investigation in science.”

Dr. Cudkowicz also pointed out the importance of working with partners like the American Academy of Neurology, the world’s largest association of neurologists and neuroscience professionals, to identify the best and brightest minds in neurology. “Our unique and critical partnership with the American Academy of Neurology means that we can tap into the largest brain trust of neurologist and brain disease researchers in the world.”

Dr. Chad Hales: Understanding Alzheimer’s

Dr. Hales received a research grant funded by the American Brain Foundation in 2009. His research used a model system to study electrical activity in Alzheimer’s disease-affected neurons. This method helped better understand the different pathologies of the disease and harness that information to potentially develop treatments. “The project allowed me to have that time to not only work on this particular set of experiments, but also start to see how they may interact with other areas in neurology and develop other lines of research,” he says.

For Dr. Hales, the grant was “instrumental” in kick-starting his career and allowing him to grow as a scientist. In the decade since receiving the grant, he has branched out into other fields such as ALS and frontotemporal dementia. “It turns out that some of these findings from that study, as well as follow-up studies, led to other interesting understanding of proteins and changes in the brain for these different brain diseases,” he shares. Dr. Hales’ research and its implications speaks to the American Brain Foundation’s belief that brain diseases are interconnected. As such, breakthroughs in one brain disease can lead to cures for many brain diseases.

Supporting Future Research

Many program alumni have also gone on to become department chairs and mentors for other trainees. In addition, they become members of the ABF and AAN board and leadership. Dr. Hales has found a similar way to give back and support brain disease research. He currently serves on the American Academy of Neurology’s research program sub-committee. It’s an opportunity that allows him to train the next generation of researchers.

Dr. Hales shares a question that frequently gets brought up during committee meetings: “What can we do to get more folks involved and really provide some opportunities for new fellows as we move forward into the future?” He’s excited about supporting future generations of brain disease researchers because he knows firsthand how planting a seed can lead to larger projects and outcomes for patients.

“These awards are instrumental because not only are many of them involving patients, but they also can lead to novel therapies and novel approaches to patient care, which ultimately is the goal for all of us.”

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

American Brain Foundation to host special live event Sept. 1st with ABF Vice Chair Susan Schneider Williams and director Tylor Norwood to discuss the making of the film, Robin’s struggle with Lewy body dementia, and the legacy the iconic actor left behind

American Brain Foundation: Minneapolis — The late Robin Williams didn’t know he was fighting a battle with an unbeatable foe: a deadly brain disease called Lewy body dementia (LBD). Now, for the first time since his tragic death in 2014, his widow Susan Schneider Williams along with many of those closest to him have come together to share his story in a new documentary titled Robin’s Wish. Directed by Tylor Norwood, the film, which will be released on Tuesday, September 1 by Vertical Entertainment, sheds light on the final days of one of the greatest entertainers of all time and his battle with LBD.

In honor of the release of Robin’s Wish, the American Brain Foundation is hosting a live behind-the-scenes conversation with Schneider Williams and Norwood on the making of the film. A special and intimate event, attendees will get a rare look into the life and legacy of Robin Williams. Taking place on the night of the film release Sept. 1, 2020, at 8 p.m. ET, the event will be moderated by David Dodick, MD, FAAN, chair of the American Brain Foundation and professor of neurology at the Mayo Clinic College of Medicine. The webinar is free to attend and open to the first 5000 virtual attendees. Register to attend at www.americanbrainfoundation.org/robins-wish.

The event will provide a behind-the-scenes look at Williams’ struggle with LBD, the second most common form of dementia. LBD causes a progressive decline in mental abilities, with symptoms ranging from visual hallucinations to Parkinson’s disease-like symptoms, devastating patients and caregivers.

“In the end, it was a little known disease in his beautifully gifted brain that became his greatest and final battle,” says Schneider Williams.

“Robin’s Wish is a moment for us to understand the pain he felt as his talents and faculties rapidly slipped away, and moreover, how in the face of that terrifying reality, he was more heroic, more compassionate than any character he ever played in any of his movies,” says director Tylor Norwood. 

The film includes Schneider Williams’ perspective and her journey from her husband’s passing to the coroner’s report, which, for the first time, revealed the presence of LBD. Knowing that a diagnosis would have made all of the difference to her family, Schneider Williams has dedicated her life to raising awareness about this fatal disease.

“Armed with the name of a brain disease I’d never heard of, I set out on a mission to understand it, and that led me down my unchosen path of advocacy,” said Schneider Williams. 

Today, Schneider Williams is the vice chair of the American Brain Foundation board where she helped create the Lewy Body Dementia Fund. This American Brain Foundation fund supports a major scientific investigation to find a biomarker for LBD, innovative research projects by early-career scientific investigators, and programs for patients and caregivers coping with the disease. To date, the fund has raised more than $3.25 million.

“I hope this film rights a wrong that was done to him, and takes away a cloud that has unjustly hung over his legacy for far too long,” says Norwood.

The film will be available September 1st on Apple TV here. 

“We had been discussing what we wanted our legacies to be in life; when it was our time to go, how we wanted to have made people feel,” says Schneider Williams. “Without missing a beat, Robin said, ‘I want to help people be less afraid.’ That was Robin’s wish.”

To support the Lewy Body Dementia Fund of the American Brain Foundation, please consider making a secure donation on the American Brain Foundation website. 

About the American Brain Foundation 

Since 1992, the American Brain Foundation has been investing in research to end brain diseases and disorders. We are a national foundation for the brain in relentless pursuit of causes, improved treatments, and cures. We unite donors and researchers to impact the lives of patients and those around them. We invest in research across all brain and all nervous system disorders knowing they are interconnected. This holistic, innovative approach allows us to build bridges between diseases and break new ground in research and application. Believing in a whole-brain approach gives us an edge in understanding and combating brain disease. We understand that when we cure one of them, we will cure many. Join us in the fight against brain disease at https://www.americanbrainfoundation.org/.

The American Brain Foundation believes in studying a broad spectrum of brain diseases and disorders

The American Brain Foundation’s mission is to bring researchers and donors together in the relentless pursuit of discovery research. We do so with the hopes it will lead to improved diagnoses, treatments, and ultimately cures for brain diseases. While the brain is a complex organ with distinct parts and unique functions, different brain diseases often interconnect with one another. Research into one area can inform investigative work on another. A cure for one disease will lead to cures for many diseases. That’s why our philosophy of “cure one, cure many” drives our commitment to invest in research across the whole spectrum of brain diseases and disorders. Learn how this philosophy plays a part in our approach and helps us nurture worthwhile partnerships.

Brain diseases are interconnected

Brain diseases and disorders interconnect with each other. So when researchers make breakthroughs for one brain disease, what we learn will apply in understanding, preventing or treating others. For example, while Parkinson’s disease, Lewy body dementia and ALS are different diseases with their own symptoms and progressions, former Foundation Board Member Ralph Józefowicz, MD, points out that they are all degenerative diseases and what’s causing one disease is very similar to what’s causing the other disease. “Funding research not for a specific disease, but a category of diseases, will allow us to more quickly develop treatments for these disorders,” he says.

Our holistic approach recognizes these interconnections and builds bridges between diseases. This helps us move closer to our vision of a life without brain disease.

Leveraging valuable partnerships

In support of “cure one, cure many,” we have developed partnerships with organizations across a wide spectrum of brain diseases. The American Brain Foundation brings together the best researchers from respected organizations fighting diseases of the brain and nervous system. Our partnership with the American Academy of Neurology allows us to tap into their massive network of neurologists and brain disease researchers and support cutting-edge research that could cure diseases and change lives. Our other partnerships with leading disease-specific organizations help us connect resources and research across the investigative community. Together, we can outsmart brain disease by making progress toward prevention, early diagnoses, improved treatments and cures.

Funding research across the whole brain

Our practice of studying the whole brain and funding research across the full spectrum of brain disease gives us the best hope for better prevention, treatment and cures. Discoveries in one field lay the foundation for future discoveries, and potentially cures, in others. For instance, the American Brain Foundation’s 2019 Scientific Breakthrough Awardee Dr. Jerry Mendell’s groundbreaking gene therapy treatment for spinal muscular atrophy is not only improving motor milestones by treating the disease in children younger than 2 years old, but it is also being used effectively to treat Duchenne muscular dystrophy.

When we cure one brain disease, we can cure many diseases. That philosophy fuels our partnerships, our commitment to funding research and our passionate pursuit of a life without brain disease.

 

 

Neurology experts explain COVID-19 considerations for patients with brain disease

In the uncertainty of the coronavirus pandemic, the American Brain Foundation knew that patients, caregivers and loved ones had questions about COVID-19 and brain disease. To help provide answers, we had leading physicians and experts host Facebook Lives to share updated information on COVID-19’s impact. This initiative provided valuable information that helped inform patients’ decision-making to benefit themselves, their families and loved ones.

We collected the following videos and articles to outline important COVID-19 considerations for those with brain disease. Learn what physicians and experts had to say about risk factors, the precautions those with brain disease should take during the pandemic and more.

Stroke and COVID-19

The pandemic affected the way physicians and nurses treat stroke as well as the way at-risk patients manage their disease. James Grotta, MD, FAAN, director of Stroke Research at the Clinical Institute for Research and Innovation at Memorial Hermann Hospital, and member of the Foundation’s board of directors, hosted a Facebook Live on stroke and COVID-19. In the video, he describes stroke warning signs as well as the preventative measures those at risk should take. Dr. Grotta urged viewers to seek immediate medical care if they experience any stroke symptoms. He also explained the safety precautions in place to keep both patients and physicians safe in hospital settings. Read what he had to say about stroke treatment during COVID-19.

Epilepsy and COVID-19

In her Facebook Live on epilepsy and COVID-19, Jacqueline French, MD, FAAN, professor of neurology at NYU Langone Hospital and chief medical and innovation officer of the Epilepsy Foundation, and member of the Foundation’s board of directors, discusses considerations for those with epilepsy during the pandemic. She emphasized how the disruption to their routine can impact patients regularly taking their medication. She also offered suggestions for keeping epilepsy patients out of hospitals. For instance, it may help to obtain a prescription for a one- to three-month supply of medication. It may also be ideal to have a method for treating a breakthrough seizure at home. Learn more about Dr. French’s recommendations for treating epilepsy during COVID-19.

Parkinson’s Disease and COVID-19

Increased vulnerability to infection may put those with Parkinson’s disease at a greater risk for COVID-19-related complications; however, the disease does not increase their susceptibility to infection. Lisa Shulman, MD, FAAN, director of the University of Maryland Movement Disorders Center and a former member of the Foundation’s board of directors, explained these secondary risks as well as some protective measures patients with Parkinson’s disease can take to lessen them. She also advocated for self-care and the use of technology to limit the isolating impact of social distancing among patients. Read more about Dr. Shulman’s recommendations for those with Parkinson’s disease during the COVID-19 pandemic.

COVID-19 and Developmental Disabilities

Shafali Jeste, MD, FAAN, associate professor in Psychiatry, Pediatrics and Neurology at the David Geffen School of Medicine at UCLA and a member of the Foundation’s board of directors, hosted a Facebook Live to discuss COVID-19 risks for adults and children with developmental disabilities. In her video, she provided an overview of signs nonverbal people may display if infected with COVID-19 or another illness. She recommended healthcare providers provide guidance and advocate self-care among caregivers. She also reminded them that those with developmental disabilities may not have access to their full educational and therapeutic services at this time. Read her advice for physicians and caregivers of those with developmental disabilities during COVID-19.

Alzheimer’s Disease and COVID-19

Ron Petersen, MD, PhD, FAAN, professor at the Mayo Clinic College of Medicine, behavioral neurologist and director of the Mayo Clinic Alzheimer’s Disease Research Center and member of the Foundation’s board of directors, speaks about the impact of COVID-19 on patients with Alzheimer’s disease. This ranged from risk and preventative measures, to tips for discussing the pandemic with loved ones who live with this disease. For those in nursing homes or long-term care facilities, Dr. Petersen also provides questions that families should ask staff regarding their precautions to keep their loved ones safe. Watch his video for more on Alzheimer’s Disease and COVID-19.

Multiple Sclerosis and COVID-19

Mark Keegan, MD, neurologist and the division chair of the Multiple Sclerosis and Autoimmune Neurology at Mayo Clinic, hosted a Facebook Live where he discussed considerations for multiple sclerosis and COVID-19. Dr. Keegan differentiates between the symptoms of an MS attack and COVID-19 infection, explains the implications of having MS during the global pandemic and answers common patient questions regarding starting or continuing disease-modifying therapy for multiple sclerosis during the pandemic. He also provides general resources for MS patients as well as resources specifically related to MS and COVID-19. Learn more about his tips for managing MS during the COVID-19 era.

Estate Planning and COVID-19

In his Facebook Live on estate planning, American Brain Foundation board member Martin Shenkman discusses important steps to take during the pandemic to protect your future—from creating wills and trusts to designating a healthcare proxy and setting up a living will. He also outlines his tips for financial planning and budgeting, in addition to organizing all estate information in one convenient location in case someone else needs to step in. For those with brain disease and without, Mr. Shenkman shows the importance of financial and estate planning during COVID-19.

If you or someone you love is affected by brain disease, it’s important to protect yourself by learning about your options and strategies that could keep you safe. For more information on neurology and COVID-19, visit the Brain & Life Magazine® COVID Resource Center.

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

Bringing together like-minded organizations and donors to support brain disease research

The American Brain Foundation is driven to support research and find cures for brain diseases and disorders. Since 1992, we’ve been connecting researchers and donors to improve the lives of the one in six people who live with brain disease and their loved ones.

Why do we commit to studying the whole brain? Our philosophy of “cure one, cure many”  stands at the forefront of everything we do. Because brain diseases are interconnected, we take a whole-brain approach to understanding and combating them. When researchers make a breakthrough in one type of brain disease, it has the potential to inform and positively impact other areas of research. We believe that when we cure one disease, we will cure many.

Our research partners and donors are what fuel our mission. They allow us to promote and fund research across the whole spectrum of brain diseases and disorders.

Research Partners

We believe in the power of working together. Because all brain diseases and disorders are related, we partner with leading organizations that fight different diseases of the brain and nervous system. Our founder and research partner the American Academy of Neurology (AAN) and our advocacy partner the American Brain Coalition (ABC) help lead the charge.

The American Brain Foundation has a partnership with the American Academy of Neurology, the world’s largest professional association of neurologists. As of 2019, more than 250 researchers received scholarships and funding through the Foundation. These grants helped them establish lifelong research careers to find cures. Indeed, 85 percent of them went on to secure funding from the National Institutes of Health (NIH) and other entities. In 2019 alone, Foundation-funded research addressed 12 brain diseases and neurological conditions, a number that continues to grow each year.

We also work with disease-specific foundations in support of research. For example, since 2010, the American Epilepsy Society and the Epilepsy Foundation of America have supported the American Brain Foundation’s Susan S. Spencer, MD, Clinical Research Training Fellowship. The award aims to launch a new generation of patient-focused epilepsy clinician scientists. By pooling resources and reducing the administrative burden, we are able to ensure that the majority of funding goes to researchers and their work.

Donors

Our donors’ contributions make our mission possible. Their support allows the American Brain Foundation to fund research that bridges the study of diverse brain diseases and disorders. By uniting donors and researchers, we are able to make an impact on the lives of patients with brain disease and their caregivers.

Giving can take on many different forms, but all donor support is vital for defeating brain diseases and finding cures. From one-time donations to monthly giving as a part of our Brain Squad, to legacy gifts and donor-advised funds, the Foundation offers many different ways to get involved and make a lasting difference.

Through collaboration with our research partners and the generosity of donors, the American Brain Foundation continues to work toward understanding and curing brain diseases and disorders. We dedicate ourselves to the belief that when we cure one, we will cure many diseases. Join us in imagining a future without brain disease.

The American Brain Foundation has named 11 researchers as the recipients of its 2020 Next Generation Research Grants in support of neuroscience research and training. The program funds early-career researchers seeking to identify causes, improve treatments and discover cures for a spectrum of brain diseases and disorders.

The American Brain Foundation partners with the American Academy of Neurology (AAN) to support the Next Generation Research Grants program, funding the innovative research of early-career investigators as they embark on their careers, encouraging passion for research and laying the groundwork for future success.

“American Brain Foundation’s continual investment in a broad range of outstanding research projects serves as a strong foundation for curing brain diseases and disorders which are an existential threat to millions of Americans,” said David W. Dodick, MD, FAAN, board chair. “When we fund the best and brightest minds to source the most high-risk and high-reward research, we move one step closer to discovering cures.”

Through the Next Generation Research Grants program, the Foundation cultivates a pipeline of early-career physicians and post­-doctorates who seek a career in clinical neuroscience, and helps position them to secure additional funding. More than 85% of American Brain Foundation researchers have gone on to secure funding from the National Institutes of Health and other entities.

The American Brain Foundation brings researchers and donors together to invest in research across the whole spectrum of brain diseases and disorders. Because these brain diseases are interconnected, the Foundation believes that when we cure one of them, we will cure many.

Next Generation Research Grants are available to those who have recently completed residency or a PhD and are pursuing an academic career in research. Recipients are vetted and chosen by the AAN’s Science Committee.

Interested researchers may apply for the 2021 program through October 1, 2020, by visiting https://www.aan.com/research/aan-research-program/www.aan.com/education-and-research/research/aan-research-program.

For more information about the research program, to apply for a Next Generation Research Grant, make a donation, and more, visit www.americanbrainfoundation.org/ngrg/.

2020 Research Award Recipients: American Academy of Neurology Awards funded by the American Brain Foundation

Dr. Lisa Shulman discusses secondary risks and considerations for patients with Parkinson’s during the pandemic

For those with Parkinson’s disease, secondary risk factors and stressors may affect their disability during the time of the pandemic. Lisa Shulman, MD, member of the American Brain Foundation’s Board of Directors and Director of the University of Maryland Movement Disorders Center, hosted a Facebook Live with the American Brain Foundation where she spoke about Parkinson’s disease and COVID-19. Watch the video for her advice on handling adjustments to routines, using personal protective equipment and practicing self-care for those with Parkinson’s disease.

Secondary Health Considerations

One major factor that puts those with Parkinson’s at risk during the COVID-19 pandemic is their vulnerability to infection. “People with Parkinson’s disease may be more vulnerable to infection in general,” says Dr. Shulman. Some of this vulnerability is related to age itself, as anyone over the age of 60 is at risk for COVID-19 complications. Additionally, people with advanced Parkinson’s disease may become more frail over time and as a result, be more vulnerable to illness. For those with Parkinson’s disease, infections of any kind typically cause Parkinson’s symptoms to worsen. Dr. Shulman points out that patients with other illnesses, such as a urinary tract infection, flu or a cough, find that these illnesses tend to worsen the symptoms of the disease and also reduce the effect of their medication. The same would be true of COVID-19 infection.

Additionally, those with Parkinson’s disease may find their basic healthcare routines affected by the pandemic. From visiting a neurologist to attending physical therapy sessions to refilling prescriptions, routines that are part of patients’ daily lives now require a change in their habits as they accommodate social distancing, whether through telehealth visits or rescheduled appointments.

For those who use physical rehabilitation services, Dr. Shulman explains, “It’s not safe to go to a rehab facility or have a physical therapist come into your home during social distancing. These things need to be delayed.” Other common practices like using health aides and housekeeping services now require carefully weighing the risks and benefits.

PPE Usage

While personal protective equipment is recommended to limit spread and contraction of the virus, Dr. Shulman explains that for those with Parkinson’s, PPE may be difficult to use and may impede mobility and communication. Masks might make those with low speech volume or slurred speech harder to understand, create a problem for those with drooling or runny noses and obscure vision—contributing to issues with walking and balance, and increasing the risk of falling. Gloves may affect dexterity of the hands and interfere with using an assistive device such as a cane or walker.

Parkinson’s and Self-Care During the Pandemic

Dr. Shulman also discusses how beginning self-care routines during this time may benefit patients. “The pandemic is fostering social isolation and considerable stress,” she says. “There are mental health consequences that are bound to increase some of the mental health issues that are preexisting in Parkinson’s disease, like anxiety.” Behaviors like social distancing and staying in can work to lessen the spread of infection, but they can also result in further isolation for patients with Parkinson’s. Cognitive and social activity impact overall health and may also delay Parkinson’s-related disability. So she encourages viewers to become familiar with online communication to limit those feelings of isolation. They can use telemedicine, or just socialize with friends and family. Dr. Shulman also recommends that those with Parkinson’s find new ways to challenge themselves cognitively with games such as word puzzles.

Physical activity is especially important for those with Parkinson’s, but Dr. Shulman acknowledges that exercising may be difficult in the absence of gyms and personal trainers. “Right now we are all in the position that tends to promote sedentary habits. This is concerning because there’s evidence that exercise and movement is integral to delaying the onset of Parkinson’s disease disability,” she says. Virtual rehabilitation strategies and streaming exercise and yoga may be a worthwhile option for those at home.

Dr. Shulman ends her talk on a hopeful note, calling on viewers to share their own tips and ideas. Practicing self-care during this time “requires a lot of creativity, being proactive, and learning from one another,” she says.

For more COVID-19 resources for patients and caregivers, please visit the Brain and Life Resource Center. 

The American Brain Foundation was founded to bring researchers and donors together in the fight against brain disease. We believe that when we cure one disease, we will cure many. Learn more about Parkinson’s disease and other brain diseases or help us in our mission by giving today.

Jacqueline French, MD, discusses important considerations during the COVID-19 pandemic for those with epilepsy

Professor of Neurology at NYU Langone Hospital and Chief Medical and Innovation Officer of the Epilepsy Foundation Dr. Jacqueline French hosted a Facebook Live for the American Brain Foundation where she discussed epilepsy and COVID-19. She was the first author of a paper, “Keeping people with epilepsy safe during the COVID-19 pandemic,” and in her video she shares some takeaways from the paper along with her experience—answering common questions and providing physician guidelines for keeping epilepsy patients safe during the pandemic. For more information on how to keep epilepsy patients out of hospitals and safe at home, watch her video below.

Considerations for Epilepsy Patients

Dr. French acknowledges that at this time it does not seem like patients with epilepsy have required hospital visits for COVID-19 at a higher rate than the rest of the population. Furthermore, it appears that COVID-19 does not substantially increase the risk of an early seizure or of people presenting with newly diagnosed seizures (although this may happen rarely). However, she explains that a few factors may increase epilepsy patients’ risk for contracting the virus.

Those with focal impaired seizures might experience an altered state of awareness and be unable to maintain proper social distancing protocols—and as a result, put themselves at risk. Others with automatisms may also come in contact with contaminated surfaces unintentionally. She recommends physicians discuss these seizure characteristics and the possible risks with their patients in order to decide whether it is safe for them to go outside alone, if they need a companion to accompany them or if they should stay indoors.

Additionally, Dr. French explains that there is currently no evidence that wearing a mask would block the airway of someone with epilepsy; however, the type of mask—for instance, masks with ties—may pose a hazard for some patients.

Guidelines for Physicians to Keep Epilepsy Patients Safe During the COVID-19 Pandemic

Dr. French explains that keeping epilepsy patients safe during the pandemic involves preventing breakout seizures and, if a seizure happens, lessening the chance that the patient ends up in the emergency department. “We want to, as far as we possibly can, keep people at home taking care of their seizures,” she says. Epilepsy patients in the ED may contribute to the high demand already placed on hospitals, risk COVID-19 infection and face long wait times and single-patient policies that might involve separating caregivers from patients in the examining room.

She offers the following three tips for physicians when it comes to keeping patients with epilepsy safe:

1. Recognize that people with epilepsy who are sheltered in place have experienced a disruption in their routines. During telehealth appointments, physicians should talk to their patients about their medical adherence, if they are remembering to take their medication, and, if not, offer suggestions such as using a pill box.
2. Help patients obtain their medication. Dr. French recommends healthcare providers prescribe a one- to three-month supply of medications to help keep patients with epilepsy out of hospitals.
3. Give patients an action to take if they have a breakthrough seizure at home. Physicians can prescribe a rescue medication to be taken orally, such as lorazepam or diazepam, to buy time for the patient’s family to call their doctor. For those with cluster seizures, a diazepam or midazolam nasal spray would hit the bloodstream faster. Giving a prescription for one to two weeks ensures they have something in case of an attack.

Resources for Physicians and Patients

Dr. French also provides additional resources for physicians looking for information on COVID-19 and seizures. You can find these resources listed below.

• American Epilepsy Society’s COVID-19 page
• National Association of Epilepsy’s list of COVID-19 resources for members
• International League Against Epilepsy’s resources for patients, providers and researchers
• International Bureau for Epilepsy’s resource page for healthcare providers
• Brain & Life’s COVID-19 and Epilepsy page

“When you do a telehealth visit, the first thing the patient is going to ask is about the risk of COVID, the risk to them of COVID and what they should do to protect themselves. It’s important to be able to give the person with epilepsy reading material that’s frequently updated,” Dr. French says. She recommends the American Epilepsy Society’s COVID-19 resource page for patients and families for further reading.

By keeping patients out of the emergency room and providing them with the resources to manage their epilepsy symptoms at home, physicians can arrange for care while lowering patients’ risk for COVID-19 infection.

The American Brain Foundation is proud of our partnership with the Epilepsy Foundation. ABF was founded to bring researchers and donors together in the fight against brain disease. We believe that when we cure one disease, we will cure many. Learn more about epilepsy and other brain diseases or help us in our mission by giving today.

The American Brain Foundation expresses its condolence to the family and friends of George Floyd, and revulsion at his killing. We condemn the unconscionable persistence of systemic racism and police violence against African Americans that continue to plague our country and our communities. 

Our Foundation’s goal is life without brain disease, and this cannot be achieved when health, social, and economic systems are less accessible to people of color, and at worst oppressive or deadly. It is not a coincidence that some of the most devastating brain diseases, such as Alzheimer’s Disease and stroke, disproportionately affect African Americans. More recently, the recognition of the profound and disproportionate impact of the COVID-19 infection on communities of color is a warning that they will suffer a heavy burden of neurological diseases related to the virus. 

As an organization in the United States dedicated to funding brain disease research, the American Brain Foundation is determined that the tragedy of these recent events will galvanize us to leverage our expertise and resources to help overcome the disparities in the burden of brain disease in our country. We support research. We fund scientists. We choose leaders and recruit staff. We serve patients and caregivers. We educate on brain disease. Our Foundation is committed to seeing all we do through the lens of diversity, equality, and inclusion as we continue to work toward a world without brain disease. We are inspired by the commitment of Americans and people of all colors around the world who are standing up against injustice, inequality, and racism.

 

David Dodick, MD, FAAN
Chair, American Brain Foundation

Jane Ransom
Executive Director, American Brain Foundation

American Brain Foundation Board Member Martin Shenkman talks through key financial estate planning steps to take during the pandemic

 

While some of the legal processes surrounding estate planning may have altered somewhat as the result of the COVID-19 pandemic, making these preparations for the future is necessary for all adults regardless of wealth or income level—especially at this time. Martin Shenkman of Shenkman Law hosted a Facebook Live with the American Brain Foundation to provide important steps for financial, estate and legal planning during the pandemic. “My hope is that by giving you practical steps, it will empower you and help you to live a safer life at this time,” he says. Watch his video or download his white paper for his advice on a solid approach to estate planning during these times.

 

Financial Planning 

Mr. Shenkman explains that the first step in planning financially for your future is to create a financial roadmap and make it available for people to rely on in an emergency. Begin by listing every recurring monthly billing expense you pay and how it’s paid, as well as the same information for non-monthly bills such as property tax and life insurance. He also recommends including a list of your income sources—where they come from, what they are and how they come into your bank account—with enough detail that someone can ensure all your money gets into your accounts. Finally, add in contact information for key people such as your broker, insurance agent or financial planner.

Then, he recommends developing a budget based on real numbers rather than the standard information provided for someone of your age and income bracket. “Your expenses could be markedly different than what average expenses are of someone your age and income level,” Mr. Shenkman explains. “You need to tailor what you do to your own situation.” If you have a brain disease or neurological condition, those costs should also be factored into your budget. For those having financial issues as the result of the market decline or other reasons, focus on cutting expenses to ensure your money doesn’t run out.

Once you have your plan in place, he advises having someone objective like a financial planner or accountant review it. Often these services can be provided through financial institutions for a reduced cost. Financial forecasts or models are also worth the expense, as they allow you to project what your retirement will look like down the line and allow you to tailor your budgets accordingly. 

Other Tips

• Put your bills on autopay. Not only does this make things easier for someone to step in in the event of illness, it also helps avoid elder abuse by keeping sensitive documents out of your mailbox.
  
• Back up important information in your wallet. Take a photo of the back and front of every ID, license and card in your wallet and store the images securely in the cloud with password protection or on an encrypted laptop that someone you trust has access to.
• Store important financial documents in one place. Find out where all of your important financial, estate planning and health-care documents are located and make them accessible electronically.
• Put together an emergency envelope. Print and organize all of your health-care documents in a single envelope that can be grabbed quickly in the event of an emergency.

 

Estate Planning

The COVID-19 pandemic has highlighted the need for individuals to begin estate planning or to revise their existing documents. “Estate planning is not just planning for your death, it’s planning for your future. It’s planning to protect yourself,” Mr. Shenkman explains and says that every adult needs these core documents.

Letter of Introduction
This letter contains the nuances that don’t go into a legal document, including a heartfelt explanation of what you’ve done and why, as well as any plans you would like carried out in respect to raising children, etc. These little explanations might not seem important, but can deflect issues between family members later.

Power of Attorney
This form allows a designated person to make financial, legal and tax decisions for you if you can’t do so yourself. Due to the pandemic, he recommends including language for durable rather than springing power of attorney, as the later requires two physicians to submit letters that state you are incapacitated for the power of attorney to be granted—which may not be possible with the current burden on the healthcare system.

Living Will
A living will is a statement of healthcare wishes. Mr. Shenkman advises people that many forms available online express blanket prohibitions against intubation, which may not make sense in a COVID-19 environment. “You may be able to survive COVID-19 but you might need to be intubated. You don’t want a blanket prohibition now,” he says.

Will and/or Revocable Trust
With courts out of session, Mr. Shenkman recommends having revocable trust, which is “easier, simpler and avoids probate.” He also advises having a pour-over will that expresses anything you own at the time of death goes into the trust, and the trust will explain where things are divided, address powers of appointment as well as name guardians and an executor.

Health Care Proxy
This document authorizes someone to make healthcare decisions on your behalf. If possible, you’ll need to specifically allow the use of an electronic platform for means of making a decision.

HIPPA Release
This form authorizes someone to communicate with your physicians and access your medical records.

 

For those with brain disease and without, Mr. Shenkman highlights the importance of financial and estate planning when it comes to preparing for the future. He encourages viewers to start with small steps and be proactive. His white paper provides more detail on estate planning.

The American Brain Foundation was founded to bring researchers and donors together in the fight against brain disease. We believe that when we cure one disease, we will cure many. Learn more about brain disease and COVID-10 considerations or help us in our mission by giving today.

Imagine feeling like you are in perpetual motion!

Mal de Débarquement Syndrome (MdDS) is a little known, often misunderstood, neurological condition characterized by feelings of unrelenting rocking, bobbing, and/or swaying that generally manifest after a passive motion event such as cruise, airplane flight, train, car travel, or even elevator usage. The motion symptoms seem to be alleviated by a return to passive motion but upon completion, the symptoms can be exacerbated. In fact, this trait can be used as a diagnostic tool. There are reports of the symptoms occurring from non-motion events. Currently, reports show MdDS to be more prevalent in women between the ages of 30 and 60, but there are many men and younger women who demonstrate symptoms.

Yoon-Hee Cha, MD, Associate Professor at the University of Minnesota and one of the principal investigators of MdDS, states, “The MdDS phenomenon is the natural result of the human brain adapting to environmental motion and is thus the quintessential neurological disorder.”

People living with MdDS often report secondary symptoms of fatigue, headaches, cognitive impairment, staggering gait, and insomnia. Symptoms not commonly associated with MdDS are rotational vertigo, nystagmus, or hearing loss. As with other neurological conditions, MdDS appears to be influenced by lack of sleep, stressful situations, repeated motion events, barometric pressure, and illness. In some cases, the symptoms resolve, but many live with the symptoms for many years with no resolution.

Although documentation of MdDS exists in the writings of Erasmus Darwin, there is a dearth of medical literature associated with the syndrome, and even fewer mentions in peer-reviewed biomedical literature. More patient-based research into all aspects of the syndrome is needed so that a reliable treatment can be developed. Currently, one does not exist.

Disease Resources

• The MdDS Foundation maintains a website that includes a list of biomedical literature for professionals, common symptomology for patients and caregivers, a symptom severity scale, and patient accounts in a blog format. In addition, the Foundation offers online support groups which include members from over 57 countries.
• National Organization for Rare Disorders
• Mal de Débarquement Syndrome Diagnostic Criteria
• National Institute on Deafness and Other Communication Disorders
  31 Center Drive, MSC 2320, Bethesda, MD USA 20892-2320
  Email: [email protected]

Presentation at Commitment to Cures Gala in Toronto, April 29

FOR IMMEDIATE RELEASE
Media Contact:
Jane Ransom, Executive Director, American Brain Foundation
[email protected]
(612) 928-6317

Minneapolis – The American Brain Foundation (ABF) will present Jim Cramer, host of CNBC’s Mad Money, with the 2020 Ambassador Award in recognition of his advocacy for migraine research and awareness.

The award will be presented at Commitment to Cures, ABF’s annual fundraising and awards gala at the Hilton Toronto, April 29, 6-9:00 p.m. The gala will gather many of the world’s preeminent leaders in neurology to celebrate game-changing advances in brain disease research. Cramer will also serve as Master of Ceremonies for the evening.

“As one of an estimated 39 million Americans and 1 billion people worldwide who live with migraine, I understand its debilitating effects, despair, stigma, and utter disruption of every aspect of life,” said Cramer. “By sharing my story, I hope to connect those living with migraine to quicker diagnosis and treatment, and to help migraine be recognized and treated like the public health crisis it is.”

True to his word, Cramer has leveraged his influence and reach as a successful television personality to raise awareness, educate the public, and advocate for research funding. And in November 2019, the American Migraine Foundation named Cramer as spokesperson for its Move Against Migraine campaign.

“The brain is a marvelous machine, full of mysteries, like migraine, that neurologists around the world seek to solve,” said Cramer. “I just wish mine didn’t hurt so much, which is why I am drawn to do my part as an advocate. I am deeply honored to receive this recognition from the American Brain Foundation.”

The American Brain Foundation promotes and invests in research across the whole spectrum of brain disease and believes that when a cure is found for one brain disease, we will cure many. ABF’s Commitment to Cures 2020 organizers aim to sell out the event at 500 guests and raise more than $250,000 to fund brain disease research.

The ticketed gala is open to the public. For more information and to register, purchase a ticket or table, or become a corporate sponsor, click here.

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

FOR IMMEDIATE RELEASE
Media Contact:
Jane Ransom, Executive Director, American Brain Foundation
[email protected]
(612) 928-6317

Minneapolis – Today, the American Brain Foundation (ABF) announced the appointment of four new officers and five new directors to its board of directors. Terms began January 1, 2020.

“The new officers and directors represent cross-sector expertise and leadership,” said Jane Ransom, ABF Executive Director. “Our research mission to cure brain diseases and disorders will surely be accelerated through their influence and leadership.”

New Officers

David W. Dodick, MD was named Chair. Dr. David W. Dodick is Professor of Neurology at the Mayo Clinic College of Medicine and Science in Scottsdale, Ariz. He is also Director of the Headache Program and Sport Neurology and Concussion Program at Mayo Clinic in Arizona, and an Adjunct Professor in the Department of Neurosciences at the Norwegian University of Science and Technology in Trondheim Norway.

In addition to chairing the ABF board, Dr. Dodick chairs the American Migraine Foundation, International Concussion Society, International Registry for Migraine Research, and International Headache Society Global Patient Advocacy Coalition. He is co-chair of the International Headache Academy, American Registry for Migraine Research, American Academy of Neurology’s (AAN) Annual Program Concussion Committee, and AAN’s Annual Sports Concussion Conference. He has authored more than 400 peer-reviewed publications and 10 books.

“After 30 years of training, learning, teaching, and researching in the field of neurology and caring for patients impacted by neurological diseases, I am profoundly humbled and honored to be named Chair of the American Brain Foundation,” said Dr. Dodick.

“ABF has the potential to become the nation’s largest charitable organization of the brain and fund research that will cure one and cure many neurological diseases. Together with the incredible group of passionate, committed, and talented members of the ABF board, and through our strategic partnership with the American Academy of Neurology, I am thrilled to have the opportunity to move us toward this goal,” said Dr. Dodick.

Susan Schneider Williams was named Vice Chair. Susan Schneider Williams is a professional fine artist, author, and advocate for brain disease research.

In 2013, Schneider Williams’ late husband, actor and comedian Robin Williams, began to suffer the debilitating symptoms of the brain disease Lewy body dementia (LBD). Undiagnosed until after his death in August 2014, LBD destroyed Williams’ life and caused him to experience unbearable anxiety, delusions, paranoia, and hallucinations. Often undiagnosed or misdiagnosed, LBD affects an estimated 1.4 million individuals and their families in the United States.

Since her husband’s death, Schneider Williams has made it her mission to raise awareness about LBD and advocate on behalf of brain disease research. She authored the editorial, “The terrorist inside my husband’s brain,” for the American Academy of Neurology’s (AAN) Neurology journal and has presented at many conferences, academic institutions, and private research corporations. In 2016, Schneider Williams was presented with ABF’s Commitment to Cures Award in recognition of her advocacy for better treatments, prevention, and cures for brain diseases. She has lobbied in Washington, DC with the AAN, Michael J. Fox Foundation, and others for better diagnostics, increased funding, and support for researchers, doctors, and clinicians.

“The American Brain Foundation’s focus—when we cure one brain disease, we will cure many—is exactly what we need to make advancements in brain disease research. Robin was diagnosed with both Parkinson’s Disease and Lewy body dementia, and these two diseases have very closely related pathology—that is, they both have Lewy bodies in the brain. In the search to understand the common mechanisms by which Lewy bodies are produced and neurons subsequently degenerate, researchers could end up unlocking a cure for multiple diseases,” said Schneider Williams. “As Vice Chair, I will help advance the ABF’s mission to ensure researchers are getting the funds they need to go after these brain diseases.”

James A. Essey was named Treasurer. Essey is president and CEO of The TemPositions Group of Companies, one of the largest regional staffing firms in the nation. The company provides temporary/contract, temp-to-perm and permanent placement staffing in accounting and finance, information technology, office support, human resources, legal, hospitality, logistics, education, and health care. Under Essey’s leadership, TemPositions is one of the few full-service staffing companies in the market today, employing approximately 6,500 people each year.

Advocating for the treatment and cure of brain disease is a family value. Essey’s mother, Sheila, was diagnosed with Amyotrophic Lateral Sclerosis (ALS) and lived courageously with the debilitating disease for 10 years.

In her honor, the Sheila Essey Award was established in 1996 by the American Academy of Neurology and ALS Association and funded by the Essey family through the American Brain Foundation. Annually, the award recognizes significant contributions in research towards the cause, treatment, prevention, or cure of ALS. Awardees receive a certificate of recognition and a $50,000 prize to fund their ALS research.

“I was flattered to be asked to join the ABF board so I could help have an impact in the treatment and eventual cure of brain disease which affects so many people each and every day,” said Essey. “As Treasurer, I hope to help guide the organization to be even more successful in raising the funds necessary to make a meaningful difference to those suffering from all forms of brain disease and hopefully, prevent others from being afflicted.”

Shafali Jeste, MD was named Secretary. Dr. Jeste is a behavioral child neurologist specializing in autism and related neurodevelopmental disorders. She is Associate Professor in Psychiatry, Neurology and Pediatrics at the UCLA David Geffen School of Medicine, and a lead investigator within the UCLA Center for Autism Research and Treatment.

Her research is focused on developing methods to improve diagnosis and treatment of neurodevelopmental disorders (NDDs) through the application of brain-based biomarkers and more targeted developmental phenotyping. Her lab studies NDDs from early infancy through late childhood.

Dr. Jeste designed innovative studies in early predictors of autism in Tuberous Sclerosis Complex (TSC), which integrates biomarkers with behavior to define atypical development prior to the onset of clinical symptoms of autism. Her work in TSC has led to the first randomized controlled clinical trial of behavioral intervention in infants with TSC.

Dr. Jeste also serves on the board of the National Organization of Rare Disorders, chairs the International Baby Siblings Research Consortium, and is editor-in-chief of the Child Neurology Edition of AAN Continuum. Dr. Jeste’s research is funded by the National Institutes of Health, U.S. Department of Defense, Dup15q Alliance, and Roche pharmaceuticals. She recently was awarded the prestigious 2019 Presidential Early Career Award for Scientists and Engineers.

“I dedicated my career to autism because there are still so many unknowns for which we need answers to best help our patients. I joined the American Brain Foundation board to give back to the neurology community, as the ABF and American Academy of Neurology were the first organizations to fund my research more than 10 years ago,” said Dr. Jeste. “As Secretary, I look forward to this expanded role and working with this inspirational group of clinicians, scientists, and advocates to improve public awareness about and funding for cutting edge and impactful research in neurodevelopmental disorders.”

New Directors

James Erwin
Jimmy Erwin is Executive Vice President of Chicago Title Commercial in Houston, responsible for all marketing innovation, strategy, and activities. He is a respected leader in the title industry, working in partnership with financial institutions, developers, and investors to resolve title challenges and meet real estate objectives.

Erwin is also President of the Will Erwin Headache Research Foundation (WEHRF). Finding a cure for diseases and disorders of the brain is a personal quest for Erwin and wife, Pam. In 2014, they co-founded WEHRF, a nonprofit dedicated to finding a cure for debilitating headaches, including migraine and cluster headaches, and relief for sufferers.

The Erwins’ named the foundation in honor of their son, Will, who suffered from debilitating cluster headaches beginning in 2008. With no effective treatment available, excruciating pain, and no hope, Will took his own life in 2010 at the age of 24.

Through the WEHRF, the Erwin family continues the journey started by their courageous son. “Will was a true pain warrior. It is now our family’s commitment to help others avoid the painful experience he endured,” said Erwin. “I am honored to join the ABF Board and support an organization that is as committed to finding cures for these debilitating diseases and bring peace to all the pain warriors and their families.”

Jacqueline French, MD
Dr. Jacqueline French is Chief Medical and Innovation Officer of the national Epilepsy Foundation (Maryland); a professor in the Department of Neurology at NYU Grossman School of Medicine; and co-director of epilepsy research and epilepsy clinical trials at NYU Langone Health’s Comprehensive Epilepsy Center. She is also the president of the Epilepsy Study Consortium, a nonprofit comprised of scientific investigators dedicated to the speedy delivery of new therapies to people with epilepsy.

“I am thrilled to join the American Brain Foundation board,” said Dr. French. “Epilepsy affects one out of every 26 people in their lifetime. I am looking forward to joining with my colleagues to fight this and the other serious brain diseases that have such a profound impact not only on those living with the disorders, but also their families and communities.”

Frances E. Jensen, MD
Dr. Frances E. Jensen is Professor of Neurology, Chair of Neurology, and Co-Director of Penn Translational Neuroscience Center in the Perelman School of Medicine at the University of Pennsylvania. Her research focuses on epilepsy and stroke and how epilepsy interacts with other disorders, such as autism and dementia, with a goal of revealing new therapies for the development of clinical trials.

To advocate for awareness of adolescent brain development and put the latest research in the hands of parents of teenagers, Dr. Jensen co-authored, “The Teenage Brain: A Neuroscientist’s Survival Guide to Raising Adolescents and Young Adults” (Harper Collins, April 2015). Translated and published in over 25 languages worldwide, the book illuminates what science has discovered about the adolescent brain and explains it in the contexts of the everyday life of an average teenager.

“I am excited to be part of this board. The ABF slogan, ‘cure one, cure many’ perfectly encapsulates my own perspective on the field,” Dr. Jensen said. “With all the recent advances in basic neuroscience and clinical investigation, we are recognizing that there are many elements common to multiple disorders. This has huge opportunities for accelerating therapy and biomarker development. The ABF is uniquely positioned to fund research that crosses multiple domains within neuropsychiatric research.”

Cindy McCain
Cindy McCain has dedicated her life to improving the safety, health, and well-being of women, children, and families in the United States and around the world.

As Chair of the McCain Institute for International Leadership and its Human Trafficking Advisory Council, McCain’s state, national, and international leadership to end labor and sex trafficking has resulted in increased awareness, public advocacy, policy change, prevention, funding for service providers, and safe housing and trauma-informed services for survivors.

McCain’s advocacy to ensure health and well-being for all includes combating diseases of the brain. The work is deeply personal. In August 2018, McCain’s husband, the late U.S. Senator John McCain, died of a glioblastoma, an aggressive form of malignant brain tumor. On July 17, 2019, the McCain family honored him on the nation’s first Glioblastoma Awareness Day, which aims to raise awareness, increase funding for research, and find a cure.

Years before her husband was diagnosed with the disease in 2017, McCain publicly shared her battle with debilitating migraines, advocacy for migraine sufferers, and calls for increased funding for research.

“I wasn’t accurately diagnosed with migraines until I was 40,” said McCain in an interview with Brain & Life® magazine. “Prior to that, I saw many doctors who seemed condescending and wrote me off as a ‘neurotic senator’s wife’ . . . If I — as a prominent person — was being brushed off by doctors, what about the mother of four in a small rural community whose migraines are never taken seriously?”

Sean C. Sansiveri
Sansiveri is Vice President of Business and Legal Affairs for the National Football League Players Association (NFLPA), the labor union that represents National Football League (NFL) players, past and present.

In this role, Sansiveri leads the NFLPA’s health, safety, and medical research initiatives, including its research and commercialization partnerships with Harvard University, the Dementia Discovery Fund, and MIACH Orthopaedics.

In 2019, Sansiveri spearheaded the union’s efforts to implement a comprehensive mental health and wellness program in the NFL, including the hiring of behavioral health clinicians by each team. In 2016, Sansiveri was instrumental in an agreement between the NFLPA and NFL to standardize protocols governing the evaluation and management of concussions. The agreement included team-specific emergency action plans and independent concussion experts on the sidelines of all NFL games.

“We continually strive to improve the health of our members and safety of their workplace. On behalf of the player-patient, the NFLPA is committed to getting the right answers, to working with those with the shared goal of protecting our members, and to serving as a model for football at every level,” said Sansiveri. “I am thrilled to join the ABF board because scientific advancements and a greater understanding of the issues that affect the health and safety of athletes can be instrumental to the advancement of healthcare, generally.”

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

FOR IMMEDIATE RELEASE
Media Contact:
Jane Ransom, Executive Director, American Brain Foundation
[email protected]
(612) 928-6317

Minneapolis – Today, the American Brain Foundation (ABF) announced Commitment to Cures 2020, its annual fundraising and awards gala to acknowledge and celebrate game-changing advances in brain disease research.

The gala will be held at Hilton Toronto on April 29, 2020, from 6-9:00 p.m., with a reception, dinner, and awards presentation. Jim Cramer, host of CNBC’s Mad Money, will emcee the evening. The ticketed event, attended by many of the world’s preeminent leaders in neurology, is open to the public.

“For the past 10 years, Commitment to Cures has raised awareness about brain diseases and disorders and critical funding to support and advance research,” said David W. Dodick, MD, ABF board chair and Professor of Neurology at Mayo Clinic’s College of Medicine (Scottsdale, Ariz.) and Director of the Headache Program and Sport Neurology and Concussion Program at Mayo.

“We’re delighted to recognize and award the milestone achievements of researchers in the field and celebrate ambassadors for brain disease research. Collectively, their leadership has brought advances in treatments and hopes for a cure to millions of people around the world,” said Dr. Dodick.

At the gala, five awards will be presented:

1. Ambassador Award to Jim Cramer, host of CNBC’s Mad Money, for advocacy for migraine research and awareness.
2. Public Leadership in Neurology Award to Emilia Clarke, actor, for advocacy for stroke rehabilitation.
3. Commitment to Cures Award to Sidney Crosby, Pittsburgh Penguins, for advocacy for concussion awareness.
4. Scientific Breakthrough Award to University of Calgary’s Michael D. Hill, MD, Andrew M. Demchuk, MD, and Mayank Goyal, MD, for advances in stroke neurology.
5. Board Chair Award to Catherine M. Rydell, CAE, for her leadership and impact for the American Brain Foundation and as CEO of the American Academy of Neurology.

Annually, Commitment to Cures is convened in conjunction with the American Academy of Neurology’s Annual Meeting, which attracts 15,000 professionals in the neurology and neuroscience fields from across North America and Canada. While this year’s events convene in Toronto, past events have been held in Philadelphia (2019), Los Angeles (2018), and Boston (2017).

The American Brain Foundation promotes and invests in research across the whole spectrum of brain disease and believes that when a cure is found for one brain disease, we will cure many. ABF’s Commitment to Cures 2020 organizers aim to sell out the event at 750 guests and raise more than $250,000 to fund brain disease research.

For more information and to register, purchase a ticket or table, or become a corporate sponsor, click here.

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

The Ted M. Burns Humanism in Neurology Award honors a member of the neurology profession exhibiting humanism through humble leadership, advocacy, innovation, and creativity.

Named for Dr. Ted M. Burns, this award seeks to encourage current and future neurologists to advocate for their patients and their field, and to innovate practical and useful mechanisms by which to educate trainees, peers, and the greater public about important issues in neurology.

This new award is made possible by friends of Dr. Ted Burns who have created the American Brain Foundation’s newest endowed fund in his honor. The inaugural award will be presented at the American Brain Foundation’s Commitment to Cures dinner on April 29, 2020 in Toronto.

Click here for full information on the Ted M. Burns Humanism in Neurology Award, including application/nomination instructions.

One in six people are affected by brain diseases and disorders: the first-grader fighting epilepsy, the neighbor fighting multiple sclerosis, the parent fighting ALS… they are not alone in this fight. Doctors. Caregivers. Friends. Family. When it comes to taking on brain disease, there are a lot of heroes out there. Who are your heroes in this fight?

Honor your heroes in the fight against brain disease with a tribute gift to the American Brain Foundation today. You can make a difference in the search for a cure.

A cure for one will be a cure for many. We’ll get there faster with your help.

GIVE TODAY

Research led by Jerry Mendell, MD has uncovered a one-time treatment for children with Spinal Muscular Atrophy–a cure for what is otherwise a fatal disease. And he is building on this treatment to develop similar therapies for patients with Duchenne and Limb-Girdle Muscular Dystrophy.

Dr. Mendell’s work involves gene therapy, a relatively new treatment option; the world saw its first gene therapy patient in 1990. Gene therapy shows promise for treating diseases for which there is no other cure.

Gene therapy requires three parts: a transgene to compensate for a faulty gene, a vector to deliver the transgene to a cell, and a promoter to turn that gene on in the right ways. In Dr. Mendell’s treatments, the vector is a harmless virus that “infects” cells with its DNA–DNA that was modified to include the new, healthy gene. Beyond muscular dystrophies, this kind of revolutionary therapy is being studied for the treatment of Alzheimer’s and Parkinson’s diseases, as well as ALS and many other neurological diseases.

The American Brain Foundation honored Dr. Mendell at our 2019 Commitment to Cures benefit event with the Cure One, Cure Many Award for his breakthrough research and for devoting his career to curing neuromuscular disorders. Dr. Mendell’s patients are living proof that when we cure one disease, we will cure many.

Learn more about diseases like Spinal Muscular Atrophy

At 15, Zoe has been navigating her Tourette syndrome diagnosis for eight years. “I had to figure out at a young age how my emotions affect my tics, from good to awful ways. It has been frustrating to figure out on my own and learn to deal with. This was the first moment in my life where my parents couldn’t fix something for me.”

Chronic tic disorders (CTDs) such as Tourette syndrome are common, affecting approximately 1% of youth. Anxiety disorders are present in the majority of youth with tic disorders but the types of anxiety symptoms and the impact of these symptoms in youth with tic disorders are not well understood.

With your help, the American Brain Foundation supports innovative researchers across the spectrum of brain disease looking to create solutions and hope for patients and caregivers. Researchers like Jennifer Vermilion, MD, who aims to better understand anxiety symptoms in youth with tic disorders in order to improve diagnosis and treatments for young people like Zoe.

“I am excited to advance our understanding of anxiety symptoms in youth with tic disorders and to better understand how to approach treatment of these patients.” – Jennifer Vermilion, MD

Support Dr. Vermilion’s important research with a gift today. Every dollar makes a difference.

 

“When we all come together, we change the world for good with one cure at a time.” – Zoe

Philadelphia – The American Brain Foundation recognized three people for their leadership of movements to defeat brain diseases afflicting 50 million Americans at an event held in conjunction with the Annual Meeting of the American Academy of Neurology on May 8, 2019. Each award recipient has raised awareness, led an organization, and advocated successfully for better treatments, prevention, and cures for a brain disease. The awardees are:

Public Leadership in Neurology Award

Ann Romney

We honor Ann Romney, former First Lady of Massachusetts, for her invaluable leadership in the fight to defeat multiple sclerosis and all neurologic diseases. Ms. Romney has generously shared her personal experience with MS with millions of people through her inspiring book In This Together and countless media appearances. She has spearheaded path-breaking MS research and helped establish the Ann Romney Center for Neurologic Diseases at Brigham and Women’s Hospital, becoming an ambassador for the health of the whole brain.

Commitment to Cures Award

Jeffrey Lurie

Jeffrey Lurie, accomplished movie producer and owner of the Philadelphia Eagles, knows autism up-close, having grown up with side-by-side with an autistic brother.
Through his personal philanthropy, Lurie has directed millions of dollars toward autism research. In addition, he created the Eagles Autism Challenge that includes a one day bike ride and family-friendly 5K run/walk featuring Philadelphia Eagles players, alumni, coaches, executives, cheerleaders and SWOOP. We are honored to present this award to Jeffrey Lurie.

American Brain Foundation Board Chair Award (posthumous)

Edgar J. Kenton III, MD, FAAN, FAHA

Dr. Edgar Kenton was not only a distinguished neurologist, he was also a member of our Board and a champion of philanthropy and of diversity in the neurology profession. He was a longtime supporter the Foundation’s research mission and a leadership donor. Dr. Kenton understood that diversity in the neurology profession would lead to better treatment, prevention and cures for all. He therefore gave generously to our Calhoun Fund, a permanently endowed fund for diversity research.

Cure One, Cure Many Award

Jerry Mendell, MD, FAAN

Dr. Mendell’s research has uncovered a one-time treatment for children with spinal muscular atrophy–a cure for what is otherwise a fatal disease. And he is building on this treatment to develop similar therapies for patients with Duchenne and limb-girdle muscular dystrophy. The American Brain Foundation honored Dr. Mendell with the Cure One, Cure Many Award for his breakthrough research and for devoting his career to curing neuromuscular disorders. Dr. Mendell’s patients are living proof that when we cure one disease, we will cure many.