November is National Epilepsy Awareness Month

More than 3.4 Million Americans, 470,000 children, Affected by the Disease

‘My Shot at Epilepsy Challenge’ to Raise Awareness for Epilepsy Research 

CHICAGO, IL – Citizens United for Research in Epilepsy (CURE) and the Epilepsy Foundation are joining forces with a power player in the Broadway community this November to raise critically-needed funding for epilepsy research. Officially launching November 1 for National Epilepsy Awareness Month, the “My Shot at Epilepsy Challenge” is an awareness and fundraising campaign inspired by the song “My Shot” from the hit musical HAMILTON. Created by Miguel Cervantes—star of the Chicago production—and his wife Kelly, a CURE board member, the My Shot at Epilepsy Challenge proceeds will directly fund epilepsy research.

Miguel and Kelly are driven to fight for a cure because of a deeply moving personal connection to the cause. Their daughter Adelaide suffers from a severe and incurable form of epilepsy known as infantile spasms, the cause of which remains unknown.

“It breaks my heart when I look into my daughter’s eyes and know there is not yet a cure that can help her,” says performer and activist Miguel Cervantes. “That’s why I’m inviting everyone to join me this National Epilepsy Awareness Month in a vital campaign to help raise awareness and funds for a cure.”

Through the “My Shot at Epilepsy Challenge”, Miguel is urging the public to follow three steps:

  1. Take Your Shot– Take a still photo or video striking the “My Shot pose” (arm raised in the air, with index finger pointing up)
  2. Donate– Make a donation at MyShotAtEpilepsy.org
  3. Share– Post “shots” on social media, using the hashtag #MyShotAtEpilepsy, tag friends and challenge them to participate and donate within 24 hours

“Millions of Americans are living with epilepsy,” says Susan Axelrod, Founding Chair of CURE. “This places an immense burden on these individuals, their families and society as a whole. The need to advance research efforts in this field is urgent and long overdue. We are so grateful to the Cervantes family for sharing their family’s story to help all who struggle.”

Epilepsy is a disease with a wide spectrum of severity. More than 3.4 million Americans, 470,000 of them children, have epilepsy. For some, it has minimal impact on daily life, but for more than a million patients, many with seizures that cannot be controlled with existing treatments, epilepsy can have significant lifelong impact on the ability to live independently and even on life expectancy. Epilepsy impacts 43% more people than Parkinson’s, Multiple Sclerosis, Muscular Dystrophy, and Cerebral Palsy combined. Yet NIH funding is 60% less than funding for these other neurological diseases combined.

“This is an exciting time where advances in scientific research appear more promising. The ‘My Shot at Epilepsy Challenge’ is a great opportunity to raise awareness and promote understanding,” says Kate Carr, CEO of CURE. “Many, whose lives are not touched, do not understand the severity and impact of this disease. We hope that this campaign will help bring attention and funds to this cause and help advance the search for answers that can transform and save lives.”

“Seizures in approximately one-third of individuals with epilepsy continue to be uncontrolled today – with no significant difference in patient outcomes in over 50 years,” says Philip Gattone, President and CEO of the Epilepsy Foundation.  “That means, every year, millions of individuals and families suffer devastating impact, including the immeasurable pain of thousands of lives lost. Through the ‘My Shot at Epilepsy Challenge’, Miguel and Kelly Cervantes courageously offer new hope and inspiration that by coming together, we will discover new therapies and research that will end epilepsy once and for all.”

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About CURE — Citizens United for Research in Epilepsy (CURE) is the leading nongovernmental agency fully committed to funding research in epilepsy. It was founded by Susan Axelrod and a small group of parents of children with epilepsy who were frustrated with their inability to protect their children from seizures and the side effects of medications. CURE is dedicated to the goal of “No seizures. No side effects. End epilepsy.” CURE works relentlessly to find a cure for epilepsy by raising funds for research and by increasing awareness of the prevalence and devastation of this disease. CURE has the distinction of being a 4-star charity on Charity Navigator, the highest award, recognizing sound fiscal management and commitment to accountability and transparency. For more information on CURE, please visit www.CUREepilepsy.org

About the Epilepsy Foundation — The Epilepsy Foundation, a national non-profit with over 50 local organizations throughout the U.S., has led the fight against seizures since 1968. The Foundation is an unwavering ally for individuals and families impacted by epilepsy and seizures. The mission of the Epilepsy Foundation is: to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives. The Foundation works to ensure that people with seizures have the opportunity to live their lives to their fullest potential. For additional information, please visit epilepsy.com. The Epilepsy Foundation’s SUDEP Institute works to prevent Sudden Unexpected Death in Epilepsy (SUDEP) and support people confronting the fear and loss caused by SUDEP. (www.epilepsy.com)

CURE and Lundbeck Announce 2017 Education Enrichment Fund Scholars

CHICAGO, IL – Citizens United for Research in Epilepsy (CURE) and Lundbeck have announced the naming of six new Education Enrichment Fund (EEF) Scholars.

The EEF Scholarships—made possible by generous support from Lundbeck—award a one-time scholarship (up to $5,000) to cover tuition, books, and course materials for those living with epilepsy, or for family members and caregivers of those impacted by the disease. The scholarship is to be used toward coursework advancing personal knowledge in research, health education, advocacy and/or awareness in relation to the recipient’s experiences with epilepsy.

Launched last year by CURE and Lundbeck with three scholars, the EEF Scholarship program has doubled in 2017 to fund six scholarships. The 2017 winners are:

  • Drake Abramson, University of Indianapolis
  • Jacqueline Bridges, University of Pittsburgh
  • Brianna Brodeur, University of Illinois—Champaign
  • Jordan Kaufman, Rollins College
  • Casey Nunes, Benedictine University
  • Nolan Wu, Trinity University

 

The 2017 scholars include students personally living with epilepsy and related syndromes, and ones caring for family members impacted by epilepsy. The scholars’ academic interests include neuroscience, biology, and public health—most with an eye to studying epilepsy.

“I am so inspired by the incredible individuals who have received the Education Enrichment Fund scholarships,” said Lorena Di Carlo, Vice President & General Manager, Neurology, at Lundbeck. “They have each taken adversity and channeled it into something positive. Lundbeck is honored to support them in their pursuit to help people who are living with epilepsy.”

“At CURE, we understand it’s vital to make a difference today in the lives of those impacted by epilepsy, and also to inspire and support the new generation of researchers and scholars that will hopefully end this disease,” said Kate Carr, CEO of CURE. “The EEF Scholars program helps us achieve both of these goals. Because of the strong support from Lundbeck, we are able to make a meaningful impact in the lives of these exciting young scholars.”

‘Hamilton’ star fights for people with epilepsy (including his own daughter)

Al Roker and the TODAY Show came to Chicago to profile Miguel Cervantes – star of the Chicago production of HAMILTON – his wife Kelly, and their daughter Adelaide’s challenging journey with epilepsy. Also interviewed was Dr. Charles Marcuccilli, MD, PhD, director of pediatric epilepsy at University of Chicago Medicine Comer Children’s Hospital. The segment also reports on Miguel’s original song “’Til the Calm Comes” from which all proceeds from iTunes downloads go to support CURE.

Click here to view the TODAY Show segment.

Click here to download the song.

CURE Grantee Awards Announced

CURE is pleased to announce new recipients of funding for its Sleep & Epilepsy Award, Taking Flight Award, and Innovator Award grants. CURE presents these grants for novel research projects that focus on finding the cures for epilepsy and address the goal of “no seizures, no side-effects, end epilepsy” Specifically, CURE funds research that works to understand and prevent epilepsy, identify disease modifying or eliminating therapies, eliminate SUDEP (Sudden Unexpected Death in Epilepsy), and reverse deficits caused by frequent seizures. These researchers are added to the long list of distinguished CURE grantees helping pave the way to a cure for epilepsy. Since its inception in 1998, CURE has been at the forefront of epilepsy research, raising more than $50 million to fund over 200 cutting-edge projects in 15 countries around the world.

 

SLEEP & EPILEPSY AWARD GRANTEE

Franck Kalume, PhD
Seattle Children’s Hospital

Non-pharmacological manipulations of sleep and circadian rhythms to prevent seizures and sudden death in mouse models of refractory epilepsy

Acute and chronic sleep and circadian disruptions are commonly present in people with treatment-resistant epilepsies. They are linked to several negative consequences, including cognitive impairment, emotional disorders, and poor seizure control and quality of life. In planned studies, Dr. Kalume and his team will use well-established genetic mouse models of human refractory epilepsies, namely the Dravet syndrome and focal cortical dysplasia. First, they will correct sleep abnormality by manipulations of daily feeding, locomotor activity, or environmental temperature. Then, they will examine the impacts of these interventions on the course of epilepsy and sudden unexpected death phenotypes.

This award of $220,000 allows researchers to study the connection between sleep and epilepsy, and translate findings to significantly help patients. This Sleep and Epilepsy Award is possible because of support from The BAND Foundation.

 

TAKING FLIGHT AWARD GRANTEES

Gary Brennan, PhD
Royal College of Surgeons in Ireland

Towards the understanding of the epitranscriptome in epileptogenesis

The molecular mechanisms which drive the development of epilepsy following epilepsy-inciting events are still being unravelled. Once thought to merely represent the DNA code and facilitate translation, RNA has more recently been shown to be involved in numerous cellular and disease processes through the discovery of non-coding RNAs, regulatory long non-coding-RNA, circular RNAs, etc. Similarly, the regulation of RNA itself has been shown to be extremely complex. Analogous to DNA methylation and phosphorylation of proteins, RNAs have been shown to be subjected to complex regulation which determines their function. This work aims to characterise RNA regulation and function in pre-clinical mouse models of epilepsy and in human epileptic tissue, and understand how aberrant regulation of RNA can contribute to the development of epilepsy. It is hoped that gaining a more thorough understanding of the molecular drivers of epileptogenesis will allow the identification of novel anti-epileptogenic targets.

 

William Nobis, MD, PhD
Northwestern University

Evaluation of how extended amygdala control of the autonomic nervous system us altered in epilepsy and its implications for SUDEP

It has proven difficult to link the myriad proposed features leading to the cardiac and respiratory decline in sudden unexplained death in epilepsy (SUDEP). This project aims to identify a specific neuronal subtype in a deep brain nucleus which may be critical in cardiorespiratory control, providing a better understanding of the mechanism of SUDEP. The goal is first to identify that these neurons control cardiorespiratory functions and characterize them. Finally, we will verify that these neurons are activated in a genetic model of epilepsy in the hopes that further examination of these neurons might provide a potential therapeutic target to prevent SUDEP.

 

Flavia Vitale, PhD
University of Pennsylvania

A tunable, controllable microarray for mapping epileptic brain networks

Localization-related epilepsies account for the majority of patients with seizures, many of whom do not respond to medications. Surgery or treatment with implantable devices have the potential to make many patients seizure-free, but results are limited by our inability to precisely localize brain areas where seizures begin. Dr. Vitale has developed a new class of very small, flexible electrodes that can be independently controlled after they are implanted, allowing surgeons to safely map epileptic networks in the brain with high precision. With support from CURE, Dr. Vitale will build these new devices and test them in animal models of focal epilepsy, to detect and map seizure generation and spread. If successful, this exciting new technology could precisely localize seizure networks, and allow clinicians to focally ablate or suppress them with unprecedented accuracy, exactly where they are generated.

The Taking Flight Award of $100,000 seeks to promote the careers of young epilepsy investigators to allow them to develop a research focus independent of their mentor(s).

 

INNOVATOR AWARD GRANTEE

Tore Eid, MD, PhD
Yale University

Role of gut microbiota in epilepsy

Nearly one thousand different types of bacteria colonize the human gut.  Some of these bacteria are helpful to us, while others can cause disease.  Obesity, diabetes, stomach ulcers and Parkinson’s disease have all been linked to changes in the gut bacterial flora.  However, little is known about the role of the gut bacteria in epilepsy.  The goal in this research is to investigate whether certain types of gut bacteria can stop or trigger seizures and how they are able to do so.  If successful, our research could pave the way for completely new treatments for epilepsy by safely manipulating the gut bacteria using dietary intervention, probiotics, or short courses of antibiotics.

This $50,000 award explores a highly innovative new concept or untested theory that has the potential to reveal entirely new avenues for investigation in epilepsy research.

‘Hamilton’ star to put spotlight on epilepsy during North Barrington fundraiser

As reported in the Chicago Tribune:

Despite being one of the most lauded musical stage actors in the area right now, Miguel Cervantes, who plays the title role in Chicago’s production of “Hamilton,” remains humbled by the outpouring of support for his 1-year-old daughter.

And on July 10, Cervantes will be at the Wynstone Golf Club in North Barrington rallying additional support for his daughter, Adelaide, who was diagnosed with infantile spasms, according to the group Citizens United for Research in Epilepsy (Cure).

“It”s amazing to hear from people all over the world,” Cervantes said. “People are reaching out.”

At 10 a.m. July 10 at the golf course, Cervantes will start a day-long fundraiser for Cure and try to turn the spotlight on his daughter’s diagnosis.

Cervantes said epilepsy typically does not receive the same media coverage as other diseases, such as Parkinson’s, Alzheimer’s and ALS.

“So, people thank me for putting epilepsy on the map,” he said. “If my small piece of fame can help, then I’m happy to use it.”

Cervantes said his wife, Kelly, worked in event sales and also helped host events for epilepsy research in New York City before “Hamilton” came to Chicago last fall.

Their daughter has experienced ups and downs since her diagnosis, which is typical in the “the world of epilepsy,” he said.

“This is the hand we’ve been dealt. This is our new normal,” Cervantes said. “We keep fighting. We don’t have a choice.”

The fundraiser at the Wynstone Golf Club in North Barrington includes lunch, a reception dinner and awards, as well as live and silent auctions, organizers said.

Registration is open to the public. For information, call (312)-255-1801 or email events@CUREepilepsy.org.

CURE statement in support of new AAN/AES SUDEP practice guidelines

CURE supports the new AAN / AES practice guidelines on SUDEP and strongly urges patients, caregivers and physicians to openly discuss this devastating outcome of epilepsy. CURE has been a leader in increasing the awareness of SUDEP and a pioneer in supporting research that has led to a better understanding of the underlying causes of SUDEP. However, more research is urgently needed to understand the incidence of SUDEP across the epilepsies and identify effective prevention strategies that save lives.

 

Laura Lubbers, PhD
Chief Scientific Officer, CURE

 

Read the Advocate Statement

See the Guidelines

Learn more about SUDEP