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To all of our supporters this year:
Thank you for making what we do possible, and supporting Virginia's epilepsy heroes and their families!
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Epilepsy Awareness Talks and Seizure Training at Virginia High Schools
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Regional Codirector Shrinidhi Kittur gave presentations about epilepsy awareness and seizure safety at Briar Woods High School, Dominion High School, and Wakefield High School in Northern Virginia.
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Thank you for your hard work, Shrinidhi!
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Oakton High School: The MedPath Club hosted an epilepsy awareness event: 22 club members completed the Epilepsy Foundation’s online course and became certified in seizure safety!
Heritage High School in Leesburg: The Future Nurses of America Club hosted an “Epilepsy Awareness” night!
Gar-Field High School: ~10 students in Key Club have taken the Epilepsy Foundation's online seizure safety course so far and plan on getting more members certified in the next month!
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Regional Director Lowell Evans on ABC8 Richmond, De-Stigmatizing His Epilepsy Journey
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Regional Director Lowell Evans talked to ABC8 News in Richmond about his personal journey with epilepsy and his efforts to de-stigmatize the diagnosis.
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Thank you for sharing your epilepsy journey, Lowell!
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"Managing Epilepsy with the Stress of the Holidays" from CURE Epilepsy
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On this 2022 episode of the Seizing Life® podcast, Dr. Eva Alden, a Neuropsychologist at the Mayo Clinic explains the connection between stress and seizures, and offers advice, insights, and recommendations for those with epilepsy and their caregivers to help cope with stress and seizure triggers during the holidays.
Dr. Alden identifies seizure triggers that may become more common during the holidays and offers suggestions and techniques to help both avoid and reduce holiday stressors. She also offers insights for identifying and dealing with anxiety and depression, two mental health concerns for those with epilepsy throughout the year that can often become more pervasive during the holiday season. Dr. Alden also delves into the potential hassles and hazards of traveling during the holidays with a focus on what to do to prepare for difficult situations while away from home and one’s regular healthcare providers.
If you or a loved one lives with epilepsy, this episode is an excellent primer on managing epilepsy and stress during this joyous, but often challenging time of year.
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Share Your Experience with Genetic Testing for Epilepsy!
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Virginia Commonwealth University is conducting a study to better understand how families experience genetic testing for epilepsy and the ways healthcare providers present and explain this information.
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If you’re 18 years or older, have been offered genetic testing for epilepsy for yourself or your child in the past five years, and live in the U.S., you may be eligible to participate. You can still participate even if you chose not to move forward with genetic testing.
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The survey is one-time, self-administered, and takes about 10–15 minutes to complete. Eligible participants will have the option to enter a raffle for one of several gift cards.
Want to learn more? Take the survey here: http://tinyurl.com/mryz4ctf
For more information, email study lead Shelby Flores at millarflorse@vcu.edu.
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People with epilepsy, their caregivers, and others who are interested in clinical research are invited to participate in a community conversation about the KESETT study – Ketamine add-on therapy for Established Status Epilepticus Treatment Trial.
The Emergency Medicine research teams at Virginia Commonwealth University and University of Virginia Medical Center are preparing to launch the KESETT study, a multicenter clinical trial conducted in partnership with the SIREN network. The reason for doing this study is to find out whether adding ketamine to levetiracetam (also called Keppra) is safer and faster at stopping seizures than levetiracetam alone in patients who have seizures that continue despite initial emergency treatment.
As a part of our commitment to ethical research and community engagement, we are hosting virtual focus groups with community members and patients with epilepsy as well as their caregivers to share details about the study, answer questions, and gather valuable community input before we begin enrollment. Focus group participants will be compensated for their time.
If you or someone you know may be interested, please contact uvakesettstudy@uvahealth.org for more information!
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Do you have an innovative idea to help people with epilepsy and seizures?
Throw it to the sharks!
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The National Epilepsy Foundation is now accepting letters of intent (LOIs) for the 2026 Shark Tank Competition.
The deadline for submission is FEBRUARY 6, 2026.
See website for eligibility and submission details
Entries represent the most innovative new ideas in epilepsy treatment, care or community outreach for the annual Shark Tank Competition. The winner(s) of the 2026 Shark Tank Competition will receive international recognition and compete for combined awards and investment of up to $250,000 to support the development or commercialization of an important new product, technology, or concept to help people with epilepsy.
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What Epilepsy Legislation matters most to Virginians?
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Advocacy survey and preliminary results:
Richmond Regional Director and Director for Advocacy Adam Gibson has set up a survey to determine what legislation matters most to Virginia's epilepsy heroes, families, and community.
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Do the preliminary survey results reflect what you think are the most important priorities?
Please take the survey and let us know what is the most important to you!
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Regional Director Lowell Evans enjoys visit with Kaufman & Canoles
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Lowell Evans visited Virginia law firm Kaufman & Canoles to accept a donation and novelty check from the firm's giving program, kaufCANcares. Thank you to epilepsy hero mom Makayla for nominating EFVA to receive a donation!
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Annual American Epilepsy Society (AES) Conference attended by Board Member Megan Wardius
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Megan writes,
"The 2025 American Epilepsy Society's annual meeting was held in Atlanta, GA over the first weekend of December. The meeting brought together epilepsy researchers, providers, and advocates from around the world to share and learn about the latest in epilepsy treatment.
One of the most inspiring sessions that I attended was the Presidential Symposium that included 6 researchers presenting on the burden of epilepsy. The talks highlighted the impact that epilepsy has on the patient as a whole and their family, and the fact that epilepsy diagnosis and treatment is about more than just the seizures but also how the seizures affect all parts of life. The talks presented ways for providers to consider the whole person in their treatment, the impact of epilepsy on families, communities, and society, and lifestyle tools to help the brain bounce back after seizures.
It was also very impressive to see all the technology that is available for epilepsy patients and their providers. There are incredible new tools to detect and treat seizures at home. [EFVA adds that developing and new technologies are tracked by the National Epilepsy Foundation here.]
During the meeting, there was a lot of discussion about the National Plan for Epilepsy, which is a bill that has been introduced in the U.S. Congress. The bill aims to improve the lives of patients living with epilepsy and their communities by increasing the resources and funding for epilepsy education, treatment, research and more. We can all help to support the National Plan for Epilepsy by contacting our elected officials and asking them to sign on."
Thank you for the writeup, Megan!
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Dr. Elizabeth Thiele discusses new data on Epidiolex use for more broad epilepsy types
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Elizabeth Thiele, MD, PhD, current Director of the Pediatric Epilepsy Program at Massachusetts General Hospital, presented new data at the 2025 American Epilepsy Society (AES) Annual Meeting, exploring the use of Epidiolex (made by Jazz Pharmaceuticals), a purified cannabidiol oral solution, across a broader range of developmental and epileptic encephalopathies.
Although Epidiolex is FDA approved for Dravet syndrome (DS), Lennox Gastaut syndrome (LGS), and tuberous sclerosis complex (TSC), its history began with an expanded access program that enrolled patients with many different etiologies of epilepsy.
The analysis included 135 patients with developmental epileptic encephalopathies (DEEs), including:
- Aicardi syndrome (12.6%)
- CDKL5 mutations (14.8%)
- epilepsy with myoclonic-atonic seizures (8.1%)
- Dup15q syndrome (8.1%)
- early infantile epileptic encephalopathy (4.4%)
- febrile infection–related epilepsy syndrome (9.6%)
- myoclonic absence epilepsy (3.7%)
- SCN2A mutations (3.7%)
- Sturge-Weber syndrome (3.7%)
- and other genetic epilepsies (31.1%)
All told, CBD treatment was associated with a median reduction of 58.1% and 51.8% in convulsive and total seizures, respectively, after 12 weeks compared with an external placebo control arm (ECA). Notably, these results were maintained through week 48, with reductions of 63.5% and 60.0%.
Read the full article or listen to Dr. Thiele's interview on NeurologyLive here!
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Looking to let out your creative side? Join EFVA and other epilepsy heroes at our virtual Paint Nights! Attendees paint, draw, sketch, and use their imaginations to respond to artistic prompts.
Paint Nights are 3 Tuesdays a month, from 6-7 pm! Participants use their own materials to create artworks and share them with others during this fun and engaging event.
Email Lowell Evans at efva.evans@gmail.com to request the Zoom link.
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If you are an epilepsy hero in need of a paint kit to join in, please contact us! We have paint kits to distribute thanks to the Jack and Jill Club of Reston.
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Inova Neuroscience and Spine Institute
1st Tuesday every month
Link to flyer
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EFVA Central Virginia Chapter
2nd Monday every month
Link to flyer
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Virginia Epilepsy Support Group
3rd Wednesday every month
Link to flyer
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S.H.A.R.E.
Dates and times change, check website
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SHARE invites epilepsy heroes of the DC metropolitan area, Virginia, and Maryland region to meet with other epilepsy heroes over zoom and in person! Meeting times vary each month- for more information, check the website.
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THANK YOU FOR YOUR SUPPORT!
Our epilepsy community is stronger each year because of YOU.
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Register now for programs and events offered by the EFVA!
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EFVA 2024-2025 Financial Documents:
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