EFVA January 2018 Newsletter

January  2018

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SUDEP  lecture and  2nd Annual Cider Slider 8k!
Dr. Fountain gave a very concise lecture about SUDEP at the Virginia Neurological Society. There were 67 neurologists from the Commonwealth at this meeting. He distinguished very clearly how SUDEP differs from the other ways in which seizures can be fatal (status epilepticus, accidents and drowning). Then he talked about SUDEP, its mechanism, why neurologists should consider discussing SUDEP with their patients and help them take action to decrease the risk of SUDEP. The SUDEP lecture was sponsored by EFVA thanks to grants from the G. and P. Foundations and materials from the national EF. EFVA cannot bring back the precious children some parents lost, We can make sure every neurologist in Virginia is familiar with SUDEP and ways to decrease the risk of SUDEP. 
The January 13 Cider trot was organized by regional director, Gina Washington in cooperation with the city of Elkton. The race had 30 runners/walkers in participation which is a great turn-out for a Winter Race. Many local area businesses donated prizes for the swag bags such as Blue Elk Coffee, Dicks Sporting Goods, Ragged Mountain Running and many more. Participants enjoyed homemade chili and hot cider inside EACC after the race for the Awards Ceremony and raffle prize drawing. Everyone had a great time. 

Our First Seizure Dog Donation
EFVA 's First Seizure dog donation went out thanks to  successful bike ride. Thank you bike ride volunteers! Anna Grace has many forms of epilepsy and her mother, Beth Ann, is much relieved, having a new seizure dog with her. 

A young, chocolate Labrador named Maggie is being trained to be Anna Grace’s service dog. She sleeps with Anna Grace for when she has seizures at night. In parking lots, Maggie will help guide her away from oncoming traffic.

“She’s going to be trained, in a sense, like a blind person’s service dog,” Atkins said.

Maggie has been training through the PAWS Training Center in Virginia Beach since May, PAWS trainer Gemma Soberano said in an email. The family meets with Soberano in public places like Home Depot or Mount Trashmore, where the dog can learn to walk with Anna Grace without being distracted.

The certification requires the dog to pass all four phases of the program. The dog must also have been in training for at least six months and be at least a year old. 

What's New? HB 660 And The Future
Support for Federal legislation, Garrett’s legislation about marijuana (do not enforce ban in States who legalized) and the puzzling answer by Goodlatte to our parents in the valley. While our mothers were talking epilepsy medication for their young kids, the letter spoke about smoking pot. There was also a bill 660 in the Virginia General Assembly about death investigation. Last bill was withdrawn, but you can say EFVA will work on a new bill about SUDEP that has a good chance of passing.
 The Hampton Roads Kids Friendship Club was inspired by friendships formed in June of 2017 when children attended EFVA’s Studio E Art Therapy sessions.  Many were sad to have the classes end. When the children met again at their picnic and art show in July they spoke about wanting to get together again. A monthly Saturday meetup with the emphasis on talking, sharing and having fun seemed like the perfect solution.

Friendship Club is open to children ages 7-16 living with epilepsy.  A craft or art activity is planned for each meeting.  Children can get help from parents or work alone.  Some children may prefer to just watch or help others.  Light refreshments are available for children and parents. New meetings will be held in March. Please look at our calendar on Thanks to regional director, Patty Hood for organizing. 
EFVA supports all 
EFVA is thankful for our donors
Big donors for January 2018:

Dr. Bader and Dr. Lyons (with innovative programs for patients with epilepsy, pictured on right). Other large donors: Edwards family, Anonymous, Supernus, Lundbeck.
Major Donors this January
Dr. Lyons -
Dr. Bader - 
The Edwards Family -
An Anonymous Donor -
Supernus Pharmaceuticals -
Lundbeck Pharmaceuticals -
The Virginia Epilepsy Community
thanks you for all your help!

Upcoming Events
DONATE OR REGISTER FOR EVENTS by clicking "DONATE" and choosing one of the following options: 

EFVA General Donation
EFVA Kids Friendship Club (Feb, 10th)
S.E.A. at UVA - SRING GALA BENEFIT (Feb, 17th)

Registration for events are counted as donations.
Online registration amounts range from $25-$35 per person.
Additional donations are always appreciated!

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