A Special Documentary -- Epilepsy: In Search of Effective Therapies
A star-studded night for the preview of a new documentary -- Epilepsy: In Search of Effective Therapies was held at The XChange, the newest event space in the heart of Manhattan’s art community on Monday, November 27th. The film screening was co-sponsored by the Epilepsy Therapy Project (Epilepsy Therapy Project) of Reston, Virginia and Boston, and FACES (Finding a Cure for Epilepsy and Seizures) at New York University. The stars for the evening were not just those in the film who had the courage to share their stories and the physicians who care for them – the stars were also guests who came to support research to help more than one third of those with epilepsy whose seizures are uncontrolled by medication.
The film itself highlights the pressing need for new therapies for those with refractory epilepsy and features Spokesperson Chanda Gunn, World Champion and Olympic Bronze medalist, who emphasizes: “I want everyone to have the same chances that I have had.” Chanda has lived with epilepsy since she was 9 years old, but she believes that “People with epilepsy have every bit of the same kind of potential that I have. With the right medication to control it, they can accomplish their dreams as I have accomplished mine.”
In a recent poll on Epilepsy.com, 1000 persons answered the following question: What best describes your condition or that of a family member with epilepsy?
Only 17% were seizure free and had no side effects |
Film highlights
Other persons highlighted in the film include: William Braunlich, President of Epilepsy Therapy Project, his wife June, and their daughter, Heidi; Warren Lammert, Chairman and Co-Founder of Epilepsy Therapy Project, his wife Kathy, and their daughter Sylvie; the Robinsons, Doug and Diane, and their son Matthew; and also Joe Russo.
The physicians in the film underscored the need for more research and greater public awareness: Orrin Devinsky, MD, head of the Comprehensive Epilepsy Center at NYU and co-founder of Epilepsy Therapy Project; Steven C. Schachter, MD, a Harvard Medical School Professor of Neurology and Editor-in-Chief of www.epilepsy.com; and Eric Kossoff, MD, pediatric epileptologist at Johns Hopkins Hospital and an expert in the ketogenic diet.
The focus of the film, produced by Information Television Network, is simple and direct – there is a vital need to advance treatments for people with refractory epilepsy. The mission of the Epilepsy Therapy Project is to advance new therapies for people living with epilepsy. The goal of FACES is to improve the quality of life for all people affected by epilepsy through research, clinical programs, education and awareness, and community building events.
Special guest: DJ Hapa
DJ Hapa is the Director of Scratch DJ Academy in Los Angeles as well as one of the Academy’s head instructors. Scratch DJ Academy educates amateur DJs and enthusiasts by providing them with the necessary equipment and curriculum to learn this popular art form and access to well-known DJ instructors. He has been performing with Far-East Movement and Stix, and is on the International Channel’s new show X-Bytes.
Food was provided by Danny Meyers Hudson Yards Catering Company, chosen as the caterer of record for the Museum of Modern Art in 2005.
The Reality of Unmet Needs
The screening in New York is just one of many that will be held across the country to promote awareness of uncontrolled seizures, which are rarely talked about. Dr. Devinsky pointed out that the two age groups at greatest risk for epilepsy are children, especially the very young, and the elderly. “Uncontrolled seizures are an enormous problem in this country. And depending upon when and where they occur, they can be dangerous,” he said.
“Uncontrolled seizures can also take a heavy emotional toll, particularly on children,” according to Dr. Kossoff. “Sometimes children feel very stigmatized or depressed about their seizures. Some are very scared about them. Many children with epilepsy don’t tell their friends.”
Dr. Schachter added: “Few people realize the terror, uncertainty, and frustration felt by children and parents after an initial seizure and diagnosis of epilepsy. Through the long course of this disorder they will experience ongoing trials, tribulations, and even some triumphs while coping with seizures. Epilepsy affects the entire family. When you realize the magnitude of unmet needs, you understand that our shared mission is vital.”