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EFVA May 2018 Newsletter

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NEWSLETTER
May  2018
PROMOTE AWARENESS, PROVIDE ASSISTANCE 
WWW.EPILEPSYVA.COM

EPILEPSY FOUNDATION OF VIRGINIA 
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Norfolk gathering
brought EFVA staff Board and PAB members together, thanks Rita and Mary Laraway! We welcome Dr. Enlow (top photo, middle row, fourth from left) and Alison Kukla (bottom photo) to the Professional Advisory Board (PAB). We thank our board and staff members for all they do for Hampton Roads.  Dr. Enlow was active in the Epilepsy Association of Ohio and friends in Ohio say they will miss him very much.  Alison Kukla is the population health coordinator in Hampton Roads. She lives with the challenges of epilepsy while maintaining a productive professional career and an active athletic life. 
                                                                                                 

 
BICYCLE GIVE AWAYS!

EFVA has given a grant to Olivia Brichter of Norfolk, for a bicycle. Olivia is thrilled with her new bike. She looks forward to the health promoting exercise and transportation that her bicycle will provide. Olivia recently suffered a setback with her seizure management when she became ill with a kidney stone and was unable to keep down her seizure medication. Hospitalization was necessary for her kidney stone and the resulting multiple seizures that ensued. She is still recovering but we hope to have her back at the college and biking with her friends in the near future. Thanks to Mike and Patty for helping out! 


Joshua convinced EFVA exec that a bike was not cool at his age, with good arguments. Despite EFVA's efforts in exercise encouragement, Joshua can reach his job easier this way. 

Purple Day 2018
                                                      
Purple day is a day to raise awareness about epilepsy. It is celebrated around the world. Purple day was established by Cassidy Megan in 2008 to bring awareness to epilepsy. EFVA hosted three separate Purple Day's in Midlothian (near Richmond), Winchester, and Roanoke. Despite frigid temperatures and forecasts of snowstorms, the Midlothian event had a nice gathering with 30 people present. Thanks to Wendy, Fernando and Dr. Epps. 
Creative Writing
The creative writing source was a positive experience for the seven epilepsy families who participated in Charlottesville.
Logan Bromley
Seizure Smart Sixth Graders Help Classmate with Epilepsy
 
Logan Bromley has suffered from seizures since viral encephalitis left him with a diagnosis of epilepsy in 2014.  Not wanting to be different from other kids his age, Logan asked that his epilepsy not be disclosed to classmates when he enrolled in 5th grade at Saint Matthews School in Virginia Beach.
 
Just to be on the safe side, his mom, Lisa Bromley, scheduled an epilepsy awareness presentation for his classroom given by the Epilepsy Foundation of Virginia. Information about the brain and seizure first aid was given to the students by Patty Hood, EFVA regional director. Students practiced seizure first aid using a stuffed animal and learned that anyone with a brain can have a seizure. 
 
On a warm spring day, as his class was coming in from recess, Logan had his first seizure at school. Students quickly jumped into action.  They put a soft lunch bag under his head and started timing his seizure.  The students got the nurse and even did some crowd control until the seizure passed.  The next day Logan went to school and his classmates welcomed him back and asked if they did the right thing.  
Since that day, Logan has had many more seizures, and the students always take care of him.  

 When Logan had a seizure this year in sixth grade math class, it was the first time the teacher had seen Logan’s seizures.  Mr. Pugsly said he was standing there in shock as the students took care of everything.  He said it was such a beautiful thing to watch the students take care of Logan.

Sixth grade class members received an Excellence in Seizure First Aid Certificates at Saint Matthews Leader in Me Award Ceremony on March 20, 2018.  
Dr. Musto

Dr. Musto’s scientific goal is to identify a potential biomarker and preventive therapies for epilepsy.

Recently, He has received an award from the Commonwealth Health Research Board of Virginia to investigate a novel neuroinflammatory mechanism that lead to spontaneous seizures and could bring a better understanding epilepsy and potential new medicines.

He has been elected as a Chair of Epilepsy Group of Virginia Neuroscience Initiative. The vision of this group is that Virginia become one of the most recognized states in the US for clinical, education, research and awareness in epilepsy. The mission is to promote an efficient and effective collaborative effort in those areas, identifying   needs and strength, and opportunities to improve the quality of life for a patient living with epilepsy and promoting awareness about epilepsy and providing assistance to those with the disorder.

He has been bestowed with a prestigious award - Fellow of the American Epilepsy Society (FAES) – a lifetime professional honor in recognition of his accomplishments and dedication to excellence in epilepsy. Congratulations Dr. Musto on all the accomplishments!

Kids speak up

The Virginia delegation at the Capitol in Washington
 Fernando Cordero, Natalie Skigen, Representative Scott Taylor and mother 
Heather Skigen (left to right). Scott had once been present at the Virginia General Assembly EFVA USE A HELMET PREVENT EPILEPSY celebrations.

Major Donors this April and May
EISAI
SCHWAB CHARITABLE 
UCB
The Virginia Epilepsy Community
thanks you for all your help!

 
Upcoming Events
REGISTER FOR EVENTS by following guidelines on our calendar epilepsyva.com/calendar: 

Studio Art therapy in Winchester and Virginia Beach
Summer camp in Charlottesville

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

 Charlottesville, VA 22903

 
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