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ELIZABETH HART DALTON SCHOLARSHIP
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We wish to remember Elizabeth Hart Dalton’s many contributions by our scholarship. Elizabeth was a frequent and excellent speaker for the Tour de Midnight until she lost her battle with epilepsy.
The donor of the Gibbs scholarship, which used to be another scholarship available at the EFVA, decided to give to the national office in her son’s memory. Since the Executive Director of the EFVA did not want Virginia epilepsy heroes to suffer as a consequence of this decision, she decided to offer two Elizabeth Hart Dalton scholarships instead of one.
In her honor, the Epilepsy Foundation of Virginia is offering two scholarships for $2500 each. The recipient of the Elizabeth Hart Dalton Scholarship should be a student who has shown courage in dealing with epilepsy and seizures, commitment to their education, and perseverance in eliminating the obstacles that epilepsy and seizures may present.
Applications will open on the first of March; the deadline is May 31st, 2024.
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We want to thank Richmond Regional Director, Adam Gibson, for his hard work on the Virginia SUDEP legislation.
We can expect further discussions in the Virginia General Assembly very soon. The prospects look good. For more information, please google 2024 Virginia Bill 689.
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Maddy Reddan knows about epilepsy. She is a hero herself. Her first tonic-clonic seizure was in the University of Virginia dining hall. We can all imagine the commotion that caused. Because Maddy had one seizure, she was sent home with a monitoring device. She was scared another seizure would occur and unfortunately, it did. After her second seizure, she got a prescription for Keppra, with Klonopin as rescue medication.
She has good advice for other epilepsy students:
Do not go directly to class after an EEG, wash your hair first.
Maddy informs her teachers about her epilepsy but is in fear of having such conversations. If we epilepsy heroes all speak about our condition, people may get used to discussing epilepsy. Maddy is now thriving in her third year at UVA with very well-controlled epilepsy. Her phone number is (858) 831-8814 and students and other epilepsy heroes can call and text.
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New Support Group hosted by two of EFVA's Regional Directors!
Meetings will be held on the fourth Wednesday of every month from 7-8 PM via Zoom. The first meeting will be on February 28th, 2024. The amazing Dr. Lyons, who is an Epilepsy Specialist in Winchester, VA, will be the guest speaker along with former Regional Director, Gina Washington.
Scan the QR code to join or click on this link:
https://us02web.zoom.us/j/83591679780?pwd=VnFRNnEvaGljMHlLUUZ3bUFWU0k1UT09
Email efva.liyat@gmail.com or text (703) 829-0657 with any questions
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Inova and Central Virginia support group
To join the Inova support group email: erinn.o'grady@inova.org
To join the CVC support group, either scan the QR Code or click on this link: https://meet.google.com/ivc-xzwr-hig?hs=224
You can also email Jennifer at efvacvc@gmail.com to be added to the email list
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In-person support group in Roanoke, VA
Meetings will be held on April 4th, July 11th, and November 7th, 2024.
Call (434) 924-8669 with any questions
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EPILEPSY HEROES DAY CONFERENCE
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Please join us for the 3rd Annual Epilepsy Heroes Day, hosted by the Epilepsy Foundation of Virginia!
Our lineup of speakers will captivate audiences of all ages, bringing invaluable insights and inspiration.
Plus, do not miss out on the chance to have your questions answered during our dedicated Q&A period. To top it all off, lunch will be served, providing an opportunity to connect and share experiences with others in the epilepsy community. Explore numerous vendors offering free, up-to-date literature on this neurological condition.
The date is March 23, 2024, at the Delta Hotel on 1570 N Military Hwy, Norfolk, VA 23502
Doors will open at 8:00 am and the program is from 9:00 am - 2:00 pm. There will be free Parking.
Come on Epilepsy Heroes, let's Celebrate! Register for this event by clicking below.
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Interview with Dr. Fountains on results of the American Epilepsy Society meeting and other recent developments.
- Biohaven reported full results from the BHV-7000 Phase 1 study, demonstrating BHV-7000 was well-tolerated at all doses studied without the typical central nervous system (CNS) adverse effects associated with other anti-seizure medications (ASMs), such as somnolence and cognitive/mood disturbances.
- The firm Xenon is developing XEN1101, a differentiated Kv7 potassium channel opener, for the treatment of epilepsy, major depressive disorder (MDD), and potentially other neurological disorders.
- US-based biopharmaceutical company Praxis Precision Medicines has reported positive results from a Phase I study of PRAX-628, a drug indicated for focal epilepsy.
- The US Food and Drug Administration (FDA) has issued a warning for the use of anti-seizure medicines Levetiracetam (Keppra, Keppra XR, Elepsia XR, Spritam) and Clobazam (Onfi, Sympazan) can cause a drug reaction with eosinophilia (part of a group of cells called white blood cells).
- The FDA cleared Dry sensor, an at-home EEG headset, which enables self-directed use at home.
For more information click below:
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EFVA'S ONCE A YEAR FINANCIAL ASSISTANCE
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Thanks to the active participation of NP Elizabeth Benham, PA Grace Jordan, and other EFVA Professional Advisory Board members, the EFVA’s once-a-year direct assistance program is at 155 clients by mid-February compared to 89 over the last fiscal year. This is a great improvement!
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The following measures are proposed to prevent some misunderstandings so that Epilepsy Heroes can get their assistance sooner:
- By opening a Zelle account and giving the right information about the account. Regional Director, Lauren Shirley, is willing to help clients set up a Zelle account. (efva.lauren@gmail.com)
- If clients use their home address, it helps to send a picture of their most recent anti-epilepsy medication bottle to the Regional Directors so the addresses can be compared by our team. (Epilepsyva.com/ourteam)
- If the check is received at your home, please deposit it as soon as possible. All banks now have the option to deposit the check from your phone by taking a picture through your bank app. Regional Director, Lowell Evans, is willing to help with depositing checks. (efva.evans@gmail.com)
- Hopefully, clients will understand that EFVA cannot send a second check until the amount of the undeposited check has been reimbursed by the bank. The bank does such after 90 days (about three months).
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Dive into the world of creativity with our Paint Nights, occurring thrice a month on Tuesdays from 6-7 pm. The artistic fun takes place in the virtual realm, so come and join EFVA in this engaging event.
Paint Nights for Epilepsy Heroes generate great pictures and people have fun! Please contact Regional Director, Lowell Evans, at efva.evans@gmail.com for the Zoom link
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EPILEPSY FOUNDATION 2024 PUBLIC POLICY INSTITUTE
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Liya Tadesse, the Regional Director of Northern and Northwestern Virginia, represented Virginia and the Epilepsy Foundation of Virginia at the EFA 2024 PPI event. Reflecting on her experience, she shared, "My time at the Epilepsy Foundation 2024 Public Policy Institute was profoundly impactful. Together, we championed the cause of individuals living with epilepsy, dismantling barriers and fostering deeper understanding. Witnessing the resilience and determination of those affected by epilepsy was truly inspiring. Our advocacy efforts took us to Capitol Hill, where we engaged in meaningful discussions with representatives, sparking dialogue and effecting tangible change."
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GINA WASHINGTON IS BACK!!
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EFVA is pleased that long-time NOVA NW regional director Gina Washington has agreed to help her successors with their new Virginia Epilepsy support group.
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WE ARE GRATEFUL FOR YOUR SUPPORT.
OUR EPILEPSY COMMUNITY IS STRONGER EACH YEAR BECAUSE OF YOU. THE EPILEPSY FOUNDATION OF VIRGINIA WISHES TO THANK YOU !
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REGISTER FOR EVENTS by following guidelines on our calendar.
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Interested in EFVA Financial Documents?
Follow this link:
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