Virginia’s Seizure Notebook

BY KATE COOPER, VIRGINIA’S MOM

On August 14, 2004, my 17-month old daughter Virginia suffered her very first seizure. At first it was subtle: a barely perceptible twitch of the eyes. But it escalated quickly, and within 24 hours she was admitted to the ICU.

She’s had more than 13,000 seizures since that day.

For years I carried a notebook and jotted down the date and time of each and every seizure. Every nurse, every doctor, every concerned stranger asked the same questions: When was her last seizure? How often does she have them? How long do they last?

That notebook made me feel like I had answers. But here’s the problem: All of these questions assume that we’re dealing with seizures in a vacuum. And we now know that epilepsy is not a series of isolated incidents; it is a cumulative tragedy. With each and every seizure, Virginia suffers more brain damage.

Every page of that notebook represents compromised potential, lost opportunities, missed milestones. Every notation changes who Virginia is as a daughter, a sister, a student, an athlete and a friend.

I used to count individual seizures. But I finally realized that even one seizure is one too many. And I stopped counting.

Twenty years ago, Susan Axelrod stopped counting, too. She started CURE and has since helped raise more than $50 million for epilepsy research. But epilepsy research is still tragically underfunded. In fact, even though it affects 43% more people than Parkinson’s, Multiple Sclerosis, Muscular Dystrophy, and Cerebral Palsy combined, epilepsy receives 60% less funding than each of these diseases.

As the year comes to an end, please resolve to help us close this funding gap. Let’s stop counting seizures and start counting seizure-free days instead.

Join us in the quest for a cure!

A MESSAGE FROM CURE’S CEO

Susan and LaurenThe story of CURE is the story of people coming together to make a difference, to stop suffering – whether that suffering comes from seizures or from side effects of seizure medication – and to embark on a quest to end epilepsy once and for all.

Nearly 20 years ago, Susan Axelrod and a group of parents came together to form CURE. Susan was heartbroken by the devastating ways in which she saw epilepsy impacting her daughter Lauren. She was also deeply frustrated by the lack of options available for parents who wanted to fund research that would move science closer to a cure.

In the years since CURE was formed, many have joined Susan on this quest, and remarkable strides have been made. Since 1998, no private organization has provided more funding for epilepsy research, and recent advances in science are making exciting things possible.

This year CURE provided 10 patients with a genetic diagnosis for their epilepsy through our groundbreaking Epilepsy Genetics Initiative that is driving precision medicine forward, identifying new genetic causes and targeted therapies. We awarded research grants totaling more than $1.5M to 11 investigators, including the new Sleep & Epilepsy Award. And we helped provide 39 wearable seizure-tracking Apple Watches to people with epilepsy through the EpiWatch program, in partnership with Johns Hopkins University.

Momentum is building, but we need your continued support to ensure it keeps up.

Donate

We must not stop until a cure for epilepsy is found for all the millions who still need it. Together, we CAN make a difference. We are committed to working relentlessly to find a cure, and we hope that you will join us. Thank you!

Sincerely,

Kate Carr
Chief Executive Officer, CURE

Miguel and Kelly Cervantes Named 2017 Chicagoans of the Year

Miguel Cervantes admits he was distracted while auditioning for the title role in the Chicago production of Hamilton. It was May 2016, and his 7-month-old daughter, Adelaide, had just been diagnosed with epilepsy. On the day of Cervantes’s third callback in New York City, Adelaide was getting a spinal tap to try to figure out the cause. “A friend of mine happened to be outside the studio after the audition,” Cervantes remembers. “I was talking to him and put my head in my hands and got a little emotional, and he was like, ‘Hey, man, I’m sure you did great.’ And I was like, ‘Dude, thanks, but I don’t care about Hamilton that much.’?”

The news got worse a couple of months later, when doctors discovered that Adelaide had what’s known as infantile spasms, a particularly devastating form of epilepsy that can lead to severe developmental and cognitive delays. Says her mother, Kelly: “You go to the hospital and find out you have cancer, and it’s, ‘Here’s the treatment.’ You get an epilepsy diagnosis, and you hear, ‘I’m sorry, there’s no cure. Let’s start throwing darts at a board to see which drugs might help.’?”

Miguel landed the part and moved his family to Chicago, where he and Kelly connected with Citizens United for Research in Epilepsy to see how they could help others in their situation. Founded by Susan Axelrod, wife of political pundit David Axelrod, nearly 20 years ago, CURE is the nation’s largest nongovernmental organization funding epilepsy research.

The Cervanteses have since become a driving force in CURE (Kelly, a former events planner, serves on its board), as well as its new face (Miguel appeared in a CURE commercial). Miguel has put to use the platform his Hamilton role has afforded him. In April, he and members of the cast performed at a CURE gala, helping to raise $2 million. That same day, he released “?’Til the Calm Comes,” a song he wrote about Adelaide, with all proceeds going to CURE. Now Miguel is helping relaunch the My Shot at Epilepsy social media campaign. (Think the Ice Bucket Challenge, but instead of being doused with cold water, participants strike the familiar Hamilton pose—left arm shooting up the sky—to encourage donations.) “The endgame,” says Miguel, “is to put epilepsy in the same conversation as Parkinson’s and Alzheimer’s and ALS.”

Epilepsy is personal for ‘Hamilton’ star

As reported by CNN:

Miguel Cervantes and his wife, Kelly, welcomed daughter Adelaide in October 2015. They sensed that something was amiss early on.

“She wasn’t developing on a regular trajectory,” said Cervantes, who stars as Alexander Hamilton in the hit musical theater production “Hamilton” in Chicago. Soon after, Adelaide had a seizure.

“Then the terminology ‘epilepsy’ starts coming into the conversation about what’s wrong with her,” he said.

Actor Miguel Cervantes with his daughter, Adelaide, who has epilepsy. Actor Miguel Cervantes with his daughter, Adelaide, who has epilepsy.

When she was just 7 months old, Adelaide started having multiples seizures every day. She was diagnosed with infantile spasms, a serious epilepsy syndrome in infants that is frequently associated with developmental delays, according to the national nonprofit Epilepsy Foundation.

“The doctor said that ‘we don’t have any real treatment for this. We have some treatments that may or may not work, but there is no cure,’ ” he recalled.

While Cervantes was struggling with Adelaide’s care, he landed the lead role in the play. “It is the highest highs and the lowest lows all at the same time,” he said.

Take the challenge

Epilepsy is a disorder in the brain that causes seizures. According to the US Centers for Disease Control and Prevention, the cause is not always known but can be the result of a head injury, a brain tumor, a stroke or an infection in the central nervous system.

Motivated by his personal connection, Cervantes teamed up with Citizens United for Research in Epilepsy, commonly known as CURE, and the Epilepsy Foundation to raise awareness and funding for research during November’s Epilepsy Awareness Month.

Miguel Cervantes, star of the Chicago production of "Hamilton," says he was inspired by the show to get involved in epilepsy awareness. Miguel Cervantes, star of the Chicago production of “Hamilton,” says he was inspired by the show to get involved in epilepsy awareness.

Cervantes created the My Shot at Epilepsy Challenge, which urges people to take pictures in the “Hamilton pose” and donate to epilepsy research. They can share the pictures on social media, tagging friends using the hashtags #MyShotAtEpilepsy and #CUREepilepsy and challenging them to participate within 24 hours.

His aim, he said, is to get epilepsy into the mainstream conversation alongside other severe neurological disorders like Parkinson’s, amyotropic lateral sclerosis and Alzheimer’s.

“That is our goal and hope. We are here to help my daughter and to help other families that are also dealing with this kind of thing too,” he said.

Adelaide is 2 years old, but she functions much more like a newborn, Cervantes said. “She doesn’t sit or stand or talk or babble. We are always watching her to see if there is a seizure. We are always looking at her to see if there is any sign of regression,” he said.

“We have our bars very low for progress right now. Our hope is that if we can keep all the seizures under control, then any progress her brain can make due to whatever it is will begin to see itself,” he added.

Research gap

Epilepsy is the fourth most common neurological disease in the United States, according to the foundation. The CDC reports that in 2015, 3.4 million people were receiving treatment for epilepsy or had had one or more seizures in the past year.

Susan Axelrod, along with other parents of children with epilepsy, founded the nonprofit CURE in 1998 to address a lack of advocacy toward scientific research for the disease. “We looked to the National Institutes of Health and found that the budget there, was sadly, sort of reflected our lack of progress in the area,” she said. “We also looked to the private funders, and there was very little going on, very little interest amongst private donors.”

Axelrod too has a personal connection. Her daughter, now 36, started having seizures when she was 7 months old. “We spent the first 18 years of her life fighting the lack of understanding about the epilepsy disease, the stigma associated with it and most importantly our inability to stop her seizures, even if we were willing to tolerate pretty atrocious side effects from the medications,” she said.

Dr. Ajay Gupta, head of pediatric epilepsy at the Cleveland Clinic, said all epileptic medications have side effects and must be carefully monitored. “That’s why it’s really important when you make a diagnosis to have a very good discussion with the family,” he said. Side effects can include sleepiness, reduced muscle tone, tunnel vision and reduced sharpness of vision, he said adding that they can be irreversible.

Axelrod said that although her daughter has made tremendous strides, she will not be able to live independently and takes multiple medications every day.

“The diseases in which you see progress have strong strong advocacy groups behind them. Epilepsy did not,” she said.

“The awareness component is essential to making progress, to raising the dollars, building a community that will be great ambassadors, will be the people who participate in clinical trials when we get to that point,” Axelrod added.

And Cervantes is trying to do just that. “I can use Hamilton to get the message out that says this is something that needs to be more in the mainstream, more in the forefront and really talked about to see if we can get some better treatment so that people aren’t constantly on guard for, you know, seizures to come back because that seems like a terrifying way to live,” he said.

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.