‘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