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EFVA September 2017 Newsletter

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P R O M O T E   A W A R E N E S S ,  P R O V I D E  A S S I S T A N C E
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If you are interested in Lil Wayne, Virginia artists with epilepsy and
EFVA support activities, please read this newsletter.
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EFVA Picnic was a blast! 
On September 24, 2017, The Epilepsy Foundation of Virginia had a picnic in our Charlottesville headquarters. In only a couple of hours, community came together, shared their stories, and shared a warmth of support. Haley Walker raised over 

Speakers included Dr. Nathan Fountain's update on research, EFVA donation presentation by Haley Walker, SUDEP Informative by Ruchelle Buenaventura, Deb Morley on an epilepsy nurse's experience, memory research overview Meheret Kinfe and Ruchelle Buenaventura, Tour de Midnight by Erik Conrad, Charlottesville Stroll by Jennifer Chen, and Justice Bartley's  moving message about his life with epilepsy. 
Pictured as follows - Above: Justice Bartley; Left to Right: Ruchelle Buenaventura, Meheret Kinfe, Dr. Fountain and Haley, Jennifer Chen, and Epilepsy heroes
 
Have you heard about T. gondii?
Associations between the protozoan parasite, Toxoplasma gondii, and epilepsy, movement disorders, Alzheimer’s disease, and cancer have been identified by scientists. More than 2 billion people – nearly one out of every three humans on earth, including about 60 million people in the United States – have a lifelong infection with the brain-dwelling parasite. In a newly published study, 32 researchers from 16 institutions describe efforts to learn how infection with this parasite may alter, and in some cases amplify, several brain disorders, including epilepsy, Alzheimer’s and Parkinson’s diseases as well as some cancers.
When a woman gets infected with T. gondii during pregnancy and passes the parasite on to her unborn child, the consequences can be profound, including devastating damage to the brain, nervous system and eyes. There is growing evidence, however, that acquiring this infection later in life may be far from harmless.

So the researchers began looking for connections between this chronic but seemingly dormant infection and its potential to alter the course of common neurologic disorders.For more than a decade, researchers have noted subtle behavior manipulations associated with a latent T. gondii infection. Rats and mice that harbor this parasite, for example, lose their aversion to the smell of cat urine. This is perilous for a rodent, making it easier for cats to catch and eat them. Much more research needs to follow but it may be a paradigm shifter.
 
ALL THE PICTURES ARE TAKEN AT THE CHARLOTTESVILLE PICNIC FOR EPILEPSY HEROES. Above left to below right: Justice, Nathan and Haley, Epilepsy heroes, Ruchelle and Meheret and Jennifer.
What's New?
Lil Wayne has seizures
In Early September, Lil Wayne was rushed to Northwestern Memorial in Chicago, where we're told he suffered yet another seizure. Our sources say his team tried to have him discharged late Sunday afternoon so he could make it to his Vegas show. However, doctors advised against the discharge, saying he should be grounded for a few days. Wayne has suffered seizures while flying before, and the doctors felt it was too risky. 
Community 
Molly McCully Brown's Book
Molly McCully Brown is the author of The Virginia State Colony For Epileptics and Feebleminded (Persea Books, 2017), which won the 2016 Lexi Rudnitsky First Book Prize. Raised in rural Virginia, she is a graduate of Bard College at Simon’s Rock, Stanford University, and the University of Mississippi, where she received her MFA in poetry. Molly lived closed to one of the former “Colonies” and wrote a very moving poem called Grand Mal. The poem can be found online through this link, Poetry Daily: Grand Mal Seizures.
EFVA supports all 
Epilepsy awareness with Patty Hood, Hampton Roads regional director. 
 
The Woodbridge Northern Virginia support group had a great evening speaking about seizure diaries.
 
EFVA is thankful for our donors
Haley's Lemonade Stand

9-year-old Haley Walker of Fluvanna County, Virginia raised over $1,000 in one day for EFVA in honor of her 3-year-old brother, Jace, who lives with epilepsy.

At first, Haley was afraid of her brother's seizures. She was scared that something would happen to him, but later understood that it is a livable condition. As she advocates for her brother, she wishes to raise awareness for epilepsy and money for the Epilepsy Foundation of Virginia (EFVA). 

See coverage by CBS19NEWS here.
Hayes raises EFVA funds

Hayes Fountain raised funds for the Epilepsy Foundation of Virginia and had some nice TV covereage in the process.  

See  coverage by CBS19NEWS here
Major Donors this Summer
Ms. Woodie $3,507.50
Sunovion $2,250
Nancy Chandler Associates $1,000
The Virginia Epilepsy Community
thanks you for all your help!

 
Spotlight on Epilepsy Heroes
Amanda Stack tackles Creative Writing Workshop
Amanda Stack is a 30-year-old woman, a Juvenile Myoclonic Epileptic, and a nonfiction writer. While, at a young age, Amanda worried her seizure condition might hinder her career, she is now using her epilepsy to propel her career forward. Amanda is receiving her MFA in nonfiction creative writing at George Mason University; for her thesis, she is writing a memoir about her experiences with epilepsy, her grandmother’s experience with epilepsy, and what it truly means to inherit something. Through her creative writing, Amanda wrestles with her identity as a person with epilepsy and has found great solace in doing so and wants to pay it forward…by including you!
 
Join Amanda and EFVA with Studio E’s 1st Creative Writing Workshop! Similar to Studio E’s art therapy class schedule, Amanda will meet with fellow epilepsy heroes and fellow writers for 6 weekly 3-hr sessions. However, instead of visual artwork, everyone will put together a creative writing portfolio, including personal essays, memoir excerpts, poems, and short stories – pieces that you could possibly submit for publication! In each 3-hr workshop, we will not only be writing but also discussing writers’ craft, literature, creativity, epilepsy, struggle, success, love, loss, life – everything!
 
Since this will be the first-ever Studio E – Creative Writing Workshop, the logistics (start time, duration length, etc.) are quite flexible, and the location will be determined by the individuals interested in participating. Right now, Amanda is aiming to launch Studio E – Creative Writing on Monday, October 16th. With a 6-week workshop, you would be finishing your creative writing portfolio right before Thanksgiving and the rush of the holiday season. Some of the greatest writers including Charles Dickens, Edgar Allen Poe, Fyodor Dostoevsky, and Lewis Carroll were also plagued with epilepsy. You could be next the great writer added to that list!

To sign up now, email Amanda Stack at astack@gmu.edu. Let her know your availability, location, and a little bit about yourself. She is anxiously waiting to hear from you!

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

EFVA General Donation
Race for Seizure Freedom 5k (Sept 24, 2017)
Tour de Midnight (Oct 14, 2017)
Virginia Beach Stroll (Oct 15, 2017)
Lynchburg Stroll (Nov 5, 2017)
Charlottesville Stroll (Nov 5, 2017)
Cider Slider 5k (Jan 6, 2018)

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 www.epilepsyva.com/calendar
You can also register for Tour de Midnight at https://www.bikereg.com/TOURDEMIDNIGHT
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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