On Friday, April 15, Hugh O’Donnell, a 16 year old living with epilepsy, along with his family and two EFGC case managers, headed out to Washington DC, to attend Teens Speak Up!, an annual conference held by the national Epilepsy Foundation. Every year this conference brings together over 150 advocates, including Epilepsy Foundation affiliate staff, parents, teens, doctors and volunteers from across the nation, to advocate on behalf of the epilepsy community. Through this initiative, we are able to strengthen our advocacy network, share updates on the state of epilepsy research & funding as well as give families an opportunity to speak with Congress and share their stories of living with epilepsy.
LATEST EFGC NEWS
A groundbreaking study partially conducted at Lurie Children’s Hospital of Chicago found that a marijuana extract greatly reduced severe seizures in some children.
Aprecia Pharmaceuticals today announced that SPRITAM® (levetiracetam) tablets, for oral suspension, is now available as an adjunctive therapy in the treatment of partial onset seizures, myoclonic seizures and primary generalized tonic-clonic seizures. SPRITAM is the first prescription drug product approved by the U.S. Food and Drug Administration (FDA) that is manufactured using 3D printing technology. This innovative product disintegrates in the mouth with a sip of liquid and offers a new option for patients, including those who may struggle to take their medicine.
Each summer, the Epilepsy Foundation of Greater Chicago’s Camp Blackhawk gives its young participants an experience they won’t soon forget – all with NO COST to parents! For one week, these kids, ages 6-17, get to come together and enjoy all the fun activities and friendships that come with a trip to camp, while leaving behind various challenges epilepsy can bring to their daily lives. They are all surrounded–-some for the first time–-by dozens of other kids who know exactly what having epilepsy means. They don’t have to worry about what people would think if they had a seizure or if they will be excluded from activities just because they are different. At Camp Blackhawk, epilepsy is the norm.
GW Pharmaceuticals has announced positive results from the first of two Phase 3 studies of Epidiolex® (cannabidiol or CBD) in the treatment of Dravet syndrome. Median seizure reduction was 39% with Epidiolex versus only 13% with placebo, a scientifically significant finding. In addition, the side-effect profile was acceptable for an anti-epileptic drug and secondary endpoints were supportive of a robust treatment effect.
The Epilepsy Foundation of Greater Chicago is offering our college scholarships again for the 2016/2017 academic school year – apply for one today!
Charlotte Figi, an eight-year-old girl from Colorado with Dravet syndrome, a rare and debilitating form of epilepsy, came into the public eye in 2013 when news broke that medical marijuana was able to do what other drugs could not: dramatically reduce her seizures. Now, new scientific research provides evidence that cannabis may be an effective treatment for a third of epilepsy patients who, like Charlotte, have a treatment-resistant form of the disease.