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SUDEP Legislation: In Honor of Hannah Haddou
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On 4/12/25, Safaa Haddou lost her 19-year-old daughter Hannah. Hannah tragically passed away due to sudden unexpected death in epilepsy (SUDEP). She was diagnosed with epilepsy in 02/2023, and, like so many other families, Safaa was assured by medical professionals that the condition was under control, and that Hannah could lead a normal life. Hannah was the best daughter Safaa could ever ask for, despite all her struggles she never gave up or chose the easy way. She was 4 weeks away from finishing her freshman year at GMU. She loved reading and writing short stories.
SUDEP takes the lives of about 1 in 1,000 people with epilepsy each year. People with uncontrolled, frequent seizures have an even higher risk of dying. Tragically, a significant part of this is due to a lack of awareness and lack of education provided to parents and caregivers regarding the potential risks associated with epilepsy, including SUDEP. In Virginia the Medical Examiner works hard to prevent training of the staff in his office about SUDEP. Safaa is determined to help the Epilepsy Foundation of Virginia and its allied SUDEP parents to get the present legislation passed. This legislation will again be introduced by Senator Pekarsky.
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Tell EFVA what Seizure Legislation topics matter most to you!
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Richmond Regional Director and Director for Advocacy Adam Gibson has compiled a booklet outlining advocacy priorities for Virginians with Epilepsy as of July 2025. Please see epilepsyva.com/seizure-safe-legislation for the document.
Interested in sharing your thoughts and needs regarding epilepsy legislation?
Please take the survey and let us know what is the most important to you!
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9th Annual Winchester Seizure Freedom 5k
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Join us for the 9th Annual Seizure Freedom 5K, organized by the Winchester Neurological Consultants group!
When: October 11, 2025. Race begins at 9am
Where: 225 Al Smith Circle, Berryville, VA 22611
$25 registration fee and prizes for the 5k participants!
Other activities on race day include a 1-mile kids race, raffles, a pie eating contest, live music, and seizure education.
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2025 is the 10 Year Anniversary of the
Tour de Midnight!
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Thank you to our sponsors for your support of Virginia's epilepsy heroes!
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At the August support group meeting, the Executive Director explained the principles of mindfulness. Coming from Buddhist traditions (insight meditation), mindfulness started to become popular with Westerners in the 1970s. It gained momentum in the 80 and 90s, largely due to the secular, science-based approach of Jon Kabat-Zinn's Mindfulness-Based Stress Reduction (MBSR) program, which started in 1979.
Scientific research throughout the 1980s and 1990s began to validate the benefits of mindfulness for stress, anxiety, and pain management, establishing credibility in medical and psychological communities.
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The principles of mindfulness are:
1. Non-judgment An important component of mindfulness is that we are not our thoughts. They are simply thoughts.
2. Beginner’s Mind The beginner’s mind may be a familiar concept, as it’s used in other areas as well. In the context of mindfulness, it is about simplicity. Being open and curious can help save you from being stuck in a rut.
3. Trust Trust may seem like the odd one out of this list, because so much of these principles is about changing your mindset. Here, EFVA is asking you to trust your instincts.
4. Non-striving If you are always reaching for the next thing, never satisfied with where you are, how can you be happy or celebrate a victory?
5. Patience The only moment we can live in is the present moment. It isn’t possible to predict the future, and ruminating on the past is not helpful because we cannot change what came before. future would hurry up and come already or that something will change.
6. Acceptance/Acknowledgement Acceptance can be a hard one, which is why we’ve included acknowledgement as another word for the concept. Acceptance does not mean approval or compliance in every situation.
7. Letting Go/Letting Be It is way too easy to fixate on things that we cannot change. Human brains are good at that. Or, as the alternative suggests, just let the world be how it is.
8. Gratitude
9. Generosity
As most of the support group participants made it clear that independence was their first goal and were not as interested in mindfulness, Dr. Bischoff decided not to work on developing a mindfulness course with experts.
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Folk-rock singer Mike Frazier's surgery
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The songwriter was unconscious, but his voice filled the operating room. Mike Frazier’s dirty-blond locks had been partially shaved and his head sanitized. The surgeon standing over him slid his blade in a crescent over Frazier’s right ear and tugged his scalp into position. Then he began opening a window into the musician’s brain.
The surgeon, Lee Selznick, had chosen a Spotify playlist of Frazier’s music for the delicate procedure that would take three hours and would later marvel at the experience: “We were deep in his head, and listening to the words right out of the very part of him that was producing that beautiful music.”
The task that day was to reach and remove the cause of the grievous pain that had besieged and mystified Frazier for years. After almost a decade as a folk-rock singer with a rollicking vibe and a knack for storytelling, piercing stomach pain had stymied his songwriting and drawn him into a dangerous depression before he turned 30.
Source: See the full story by Michael Laris for the Washington Post (MSN link)
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The Epilepsy Foundation of Virginia are so happy that Mike chose to go to an epileptologist, Dr. Paul Lyons and an experienced neurosurgeon. We wish Mike a speedy recovery!
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Above: Dr. Paul Lyons, medical director of the Virginia Comprehensive Epilepsy Program at Valley Health Winchester Medical Center, looks over an MRI of Frazier's brain used to guide the surgery. Source
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empowER&D:
A new initiative from the National Epilepsy Foundation
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No one faces epilepsy alone and now, you can help shape the future of how we understand it. EmpowER&DTM, a new initiative from the Epilepsy Foundation of America, is launching its beta phase, and we’re inviting you to be part of it. By joining, you’ll connect your story with thousands of others and provide feedback that helps build a powerful community record researchers can use to find answers faster.
The more people who participate, the stronger the data becomes—and the closer we get to breakthroughs that matter.
Share your voice. Be part of the beta: www.epilepsy.com/beta
For more information, visit https://www.epilepsy.com/research-funding/empowerd
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Ammon's Horn Conference for Doctors a great success
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EFVA hosted its first Ammon's Horn Society Meeting Thursday night. The event was a great success!
Around 40 doctors, clinicians, and representatives gathered together in Norfolk to share knowledge, discuss research advances, and talk through patient solutions. After an opportunity to meet and network, the gathered members heard new EFVA updates from EFVA's Executive Director Suzanne Bischoff, followed by a talk from Dr. Daniel Graf on clinical research updates and non-pharmacological epilepsy management for individuals with intractable seizures.
The keynote speaker, Dr. Gregory Krauss, spoke about how to optimize anti-seizure medication treatment for individual patients. The evening was finished off with a roundtable style discussion about patients who are not helped by standard therapies, with much debate about potential options and treatments for these individuals.
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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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Epilepsy Research: Studying likelihood of epilepsy patients' emergency visits
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"Frequent seizure and epilepsy-related emergency department visits in the United States: A retrospective cohort study"
Brad K. Kamitaki, Jennifer E. Geller, Jennifer H. Dai, Uma Sarwadnya, Leila Alidoost, Harrison Clement, Kylie Getz, Charlotte Thomas-Hawkins, Haiqun Lin, Joel C. Cantor, Hyunmi Choi
First published: 05 July 2025
https://doi.org/10.1111/epi.18525
Objectives
Health disparities impact access to epilepsy care in the United States, but how these factors contribute to recurrent emergency department (ED) visits is unclear. We hypothesized that people who (1) were uninsured or had public health insurance, (2) belonged to minoritized racial/ethnic groups, or (3) resided in low-income zip codes were more likely to have frequent ED visits for seizure or epilepsy.
Methods
This was a retrospective cohort study of adult patients presenting to the ED in four U.S. states (Florida, Maryland, New York, and Wisconsin) with a primary diagnosis of seizure or epilepsy. We tracked ED visits for each patient longitudinally between 2016 and 2018. We performed a multivariable logistic regression analysis evaluating the association of the above factors with a high (>2) vs low (1–2) number of ED visits.
Results
We identified 200 962 patients who visited the ED for seizure/epilepsy, of whom 28 598 (14.7%) presented 2 times during the study period. Compared to private insurance, individuals with Medicare (adjusted odds ratio [aOR] 1.90, 95% confidence interval [CI]: 1.82–1.99), Medicaid (aOR 2.01, 95% CI: 1.93–2.09), or no insurance (aOR 1.55, 95% CI: 1.48–1.62) had increased odds of high ED visits. Black patients had a 60% higher odds of frequent ED visits compared with White patients (aOR 1.60, 95% CI: 1.55–1.65). However, these disparities were attenuated for Black patients with Medicare and Medicaid, vs private insurance. High ED use was not seen in other racial/ethnic groups. Finally, patients living in low-income zip codes (0–25th percentile of median household income; aOR 1.65, 95% CI: 1.58–1.73) were more likely to be in the high ED visit group, compared with the highest income quartile.
Significance
Racial/ethnic and socioeconomic inequities likely contribute to frequent ED visits for seizures, as evidenced by our findings from four U.S. states. Effective, multi-level interventions are needed to reduce disparities for those most affected.
Key points
- Frequent seizure-related emergency department (ED) visits are associated with lack of insurance or public insurance, although public coverage may reduce racial gaps.
- Black patients have a 60% higher odds of frequent ED visits compared to White patients, highlighting persistent disparities.
- Residence in low-income zip codes is associated with higher ED utilization for seizures or epilepsy.
- Uninsured rates among people with epilepsy were significantly higher in Florida than in Maryland, New York, or Wisconsin.
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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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