EFVA June 2018 Newsletter

June 2018

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Spreading Epilepsy Awareness (SEA) is an organization at the University of Virginia that was established with the purpose of increasing awareness of epilepsy and related stigma, serving as a liaison between the UVA student body/Charlottesville community and the UVA Epilepsy Clinic/Epilepsy Foundation of Virginia (EFVA), and fundraising for the Epilepsy Foundation of Virginia. This year, on February 17th, 2018, SEA held its First Annual Spring Benefit Gala. The event was held to raise money for the Epilepsy Foundation of Virginia in order to encourage epilepsy research, treatment, advocacy, and education. Everyone from esteemed UVA physicians, UVA students, Charlottesville residents, and more were able to attend this event, making it a great networking opportunity for everyone in attendance. There were performances by the Cavalier Symphony Orchestra. Speakers included Dr. Fountain who gave an informative speech on the reality of SUDEP (Sudden Unexpected Death from Epilepsy), and a moving speech from UVA basketball player, Justice Bartley, who spoke of his personal struggles with epilepsy and the faith it took him to overcome those struggles. Spreading Epilepsy Awareness was able to raise over $1,000. This money will be used to fund an upcoming memory trial with EFVA and SEA to improve the memory for epilepsy patients struggling with memory loss! Epilepsy heroes will be alerted in September.  
Use a Helmet Prevent Epilepsy 
Thanks to Senator McClellan and Delegate Carr for hosting the Epilepsy Foundation of Virginia celebrations for "Use a Helmet, Prevent Epilepsy" campaign at the Virginia State Capitol! The winners, Jordin and Mikayla received helmets and a copy of their own pictures.
Camp Holiday Trails
Dr. Heinan giving a lecture about epilepsy to the staff of Camp Holiday Trails! Preparing everyone involved for a fantastic summer camp with some of our epilepsy heroes. It's sure to be a fun and safe event for the entire camp!
Studio E Art Therapy
An amazing Studio E Art Therapy session was held in Winchester, Virginia. Residents were able to come out and express themselves through art. Meanwhile, there is a second Studio E session to be held in Norfolk on June 30th at 2pm. Patty Hood and the brave epilepsy heroes are continuing the art therapy in Norfolk, despite a loss of one of its participants. The young lady passed while working out at a health club. We send our condolences to all who knew her and wish Patty and her crew much strength and courage. We have also included a deep piece of work by Ashley, in memory of her friend. 
The Helmet
When a Redskins fan is advised that he should wear a helmet there is only one option: get a Redskins helmet! Nurse Deb Morley worked with the Epilepsy Foundation of Virginia to get him that helmet. Here is Dr. Bauer with Brian and the helmet. #UseAHelmetPreventEpilepsy
Dash and Splash

Ready to go for a run and then cool off in the river? EFVA's 3rd annual Fireball Dash & Splash is coming up soon! If you haven't already you can sign up here. The event will be on July 7th so make sure you get those tickets as soon as possible, they're starting to run out!
Northern Virginia Picnic
The Northern Virginia picnic was a great success! Parents brought their children. Dr. Schreiber discussed medications, new research in genetics, and SUDEP (Sudden Unexpected Death in Epilepsy Patients) with each family. Thank you to Gina for organizing. 
Tour de Midnight
Missy and Dennis Terry  are promoting the Tour de Midnight at many events around the Commonwealth. Thank you both! Link to its Facebook page here
FDA approved Epidiolex

The US Food and Drug Administration (FDA) has given the thumbs up to a purified formulation of cannabidiol (CBD) (Epidiolex oral solution, GW Pharmaceuticals) for the treatment of seizures related to two rare forms of epilepsy in patients older than 2 years of age. The two types of epilepsy indicated are Lennox-Gastaut syndrome and Dravet syndrome. 

"This is the first FDA-approved drug that contains a purified drug substance derived from marijuana," the agency announced in a press release. "It is also the first FDA approval of a drug for the treatment of patients with Dravet syndrome."

"This approval serves as a reminder that advancing sound development programs that properly evaluate active ingredients contained in marijuana can lead to important medical therapies," FDA Commissioner Scott Gottlieb, MD, said in the same release.

"The FDA is committed to this kind of careful scientific research and drug development," added Gottlieb.

He noted that marijuana-derived therapies are most appropriately brought to patients through strict clinical trials that assess both safety and efficacy, and then by going through the FDA's stringent drug approval process.

The current drug was evaluated in three randomized, placebo-controlled studies with a total of 516 patients evaluated — all with Dravet syndrome or Lennox-Gastaut syndrome. Results showed that add-on therapy with the CBD product was more effective than placebo in reducing seizure frequency.

Because of these "well-controlled" trials, which were published in the New England Journal of Medicine and Lancet, "prescribers can have confidence in the drug's uniform strength and consistent delivery that support appropriate dosing needed for treating patients with these complex and serious epilepsy syndromes," said Gottlieb.

Commonly reported adverse events in patients receiving the add-on treatment included elevated liver enzymes, sedation and lethargy, sleepiness, decreased appetite, fatigue, insomnia and poor sleep quality, infections and rash, and diarrhea.

Retrieved from:

Major Donors: May and June
The G. Foundation: SUDEP education $ 21,340.00 
National Epilepsy Foundation: Art therapy $2500.00 
LivaNova USE A HELMET $ 1000.00
The Virginia Epilepsy Community
thanks you for all your help!

Upcoming Events
REGISTER FOR EVENTS by following guidelines on our calendar 

Dash and Splash - July 7th
Winchester Picnic - July 21st
Tour de Midnight - October 13th ( )
Charlottesville Walk - November 4th

For information about bike ride, walks, and other events go to
Interested in EFVA Financial Documents?
Follow these links:
560 Ray C. Hunt Drive
P.O. Box 800754 - UVA Medical Center

 Charlottesville, VA 22903