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Visiting Dr. Epps and his wonderful staff at Bon Secours
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A visit to Dr. Epps at his clinic always means a lot of work gets done. We also enjoy taking pictures of the staff in purple. The picture below shows the four impressive volunteers at Bon Secours, who have helped the Tour de Midnight substantially for 10 years now!
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Our heartfelt thanks to (from left to right) Dr. Epps, Casey Reynolds, Stacy Kozlowski, and Stuart Belvin!
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2026 Epilepsy Heroes Day Conference celebrations
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Our 2026 Epilepsy Heroes Day Conference was held on a sunny Saturday in Norfolk, VA. All of the speakers did an excellent job presenting information or offering advice or perspectives.
Unfortunately only 62 out of the 100 registered participants came to the celebrations, leaving many lunches uneaten and the special arrangements for childcare under-utilized.
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Vaida Carpenter with the childcare setup
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Keira Lozada, Elizabeth Hart Dalton 2025 Scholarship recipient, discussed her experiences with epilepsy
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EFVA scholarship recipient Keira Lozada compared the atmosphere at Georgetown with the Kentucky Derby, where everyone wants to be first. Keira shared her success in getting access to a webpage which contained all the professor’s lectures, which was helpful when she'd had a seizure and could not attend class.
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Dr. Daniel Graf discussed epilepsy and neuroinflammation
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Daniel Graf, MD gave a thorough review of inflammation and epilepsy, discussing how cytokines increase after a seizure, as well as how the excitation neurotransmitter glutamate increases while the inhibition neurotransmitter GABA decreases. Cytokine blockers may help to curb this inflammation, in addition to eating plenty of healthy fruits and vegetables (among other remedies).
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Elsie Achieng, MD gave a detailed overview of women and epilepsy, discussing contraception, child birth, breast feeding, and menopause.
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Dr. Elsie Achieng gave a talk on women and epilepsy
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Caregiver Anna Prather Webber mentioned the commonly cited statistic that divorce rates for parents of children with special needs can reach up to 87%.* She encouraged the audience to look after their marriages. Anna also mentioned the Commonwealth Coordinated Care plus waiver offered through Virginia Medicaid, which offers services and support to individuals with physical disabilities or are chronically ill or require ongoing care (find the CCC Plus Waiver here).
*Many academic studies indicate that divorce rates are similar to or slightly higher than the general population, ranging between 22% and 40%.
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Pediatric neurologist Georg Dahl, MD, explained the overlap between headaches (migraines) and epilepsy.
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In her talk titled "You can thrive with epilepsy", CHKD PA Allison Wright related a very moving story about her epilepsy. Her epilepsy had gotten worse when she had a traumatic brain injury while intoxicated. She had seizures and was dependent on others for driving for six months, which when combined with the other seizure-related problems made her decide to avoid seizure triggers such as lack of sleep, racing, and missing medications.
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Anna Prather-Webb, Allison Wright, PA, and Dr. Georg Dahl, MD
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Suzanne Bischoff, PhD encouraged the audience to answer emails from the Epilepsy Foundation of Virginia asking for clarification about aspects of a direct assistance request. She also gave updates on the state of the foundation, sharing that the EFVA Board has approved a program which would help epilepsy heroes remember matters at work and also show professional courtesy. The aim of this program is to train epilepsy heroes, which may give them an advantage over others when applying, interviewing for, and maintaining a job. Epilepsy heroes who successfully complete such a course will receive $100 from the EFVA.
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Thank you for supporting the 2026 Epilepsy Heroes Day Conference!
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Elizabeth Hart Dalton Memorial Scholarship accepting applications until May 31st!
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The recipient of the Elizabeth Hart Dalton Memorial Scholarship is 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. Scholarships in the amount of $2,500 are awarded to selected students. There have been ten recipients of this scholarship so far.
Deadline: May 31, 2026
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EFVA welcomes new Professional Advisory Board member Allison Wright, PA
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Allison Wright, new PAB member
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Allison Wright, PA-C, is a Certified Physician Assistant with the Children's Hospital of the King's Daughters in Norfolk, VA. Diagnosed with epilepsy at the age of four, she has demonstrated remarkable resilience and has not allowed it to limit her personal or professional achievements. We are sure her experience and perspective will make her a valued member of the advisory board.
Welcome, Allison!
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11th Annual Tour de Midnight planning continues!
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Image of Tour de Midnight leadership team and volunteers
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The second meeting of the Tour de Midnight planning committee will be at the Midnight Brewery later this month. In March we had a very good meeting, starting out with an introduction of the new leadership, Gregg Hilmar.
After a big thanks to Dennis and Missy, Gregg introduced himself. The short version starts with a 45 year career in producing theatrical events in professional and educational theatre from Austin, to Las Vegas, to St. Louis, to Baltimore, and back to Richmond, with many places in between. About 15 years ago, Gregg got involved with the Richmond Area Bicycling Association. He was president of that organization in 2015 when the World Championships were held in Richmond, and for the ten years since, he has served as co-organizer.
Gregg is certified through the League of American Bicyclists as a traffic safety and bicycling skills instructor, and through USA Cycling as a professional cycling coach. He has coached a summer training team for the last 8 years, which rides at three major events each fall- including the Tour de Midnight since its inception! Gregg recently retired after 23 years at Randolph-Macon College. He is eager to move forward and support EFVA through leading the Tour de Midnight, bringing a whole host of experience in both event management and cycling.
The group discussed priorities for the coming year(s). Attracting more attendees was high on the list! To attract more cyclists, EFVA should look at new routes (though not this year), better printed maps and downloadable map files, better rest stops, better SAG support, and better integration with RABA and other cycling groups. Adding a Friday night packet pickup event at Midnight Brewery was also suggested, with potential live entertainment and some other attention-getters. Merchandise should be available and varied. It was suggested that the feed from our satellite locations be pre-recorded and played on a loop rather than live. There was other discussion about things that worked and those that could be improved. All in all, a very positive meeting!
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Are you interested in sponsoring the Tour de Midnight?
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New epilepsy drug significantly lowers focal onset seizure frequency in phase 3 clinical trials
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Stock photo from vistacreates
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A new anti-seizure candidate from Xenon Pharmaceuticals in phase 3 clinical trials has lowered seizure rates by more than 50% for some patients.
The Kv7 potassium channel opener called "azetukalner" significantly reduced focal onset seizure frequency at the 12-week mark by 53.2% in patients prescribed 25 milligrams per day, and 34.5% in patients prescribed 15 milligrams per day, while the placebo (control) group had a reduced frequency of 10%. The drug works by increasing flow of potassium ions across neurons in the central nervous system, hyperpolarizing neurons and reducing over-firing of these cells. This can be crucial in not only epilepsy, but also major depressive disorder and bipolar depression.
Xenon published the results on March 9, with plans to submit the pill for FDA approval before the end of the year.
Read more from fiercebiotech.com here
Read more from Xenon here
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"Bridging the 'Hope Gap' in Long-Term Epilepsy Management":
An Interview with Pavel Klein
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Source: epilepsyandsleep.com
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Pavel Klein, M.D., is currently Adjunct Associate Professor of Neurology at George Washington University. Dr. Klein’s clinical research includes novel treatments of epilepsy, dietary treatments of epilepsy in adults, prevention of epilepsy after traumatic brain injury, the effect of sex and stress hormones on epilepsy, and women with epilepsy. He has received grants from the National Institutes of Health and from the American Epilepsy Society, published more than 45 peer-reviewed articles, and is currently the Chair of the American Epilepsy Society Corporate Advisory Committee.
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"Pairing specificity with proactive, hopeful, and repeated messaging helps patients better understand their disease, report more accurately, and stay engaged in the possibility of improved outcomes."
-Dr. Pavel Klein
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In this [abridged] interview with Neurology Advisor, Pavel Klein, MD, Director of Adult Clinical Trials, Northeast Regional Epilepsy Group, discusses how clinicians can address underreporting, rebuild patient confidence in modern therapies, and adopt more structured, proactive communication strategies to improve outcomes in epilepsy care. Read the full article here.
Neurology Advisor: How can providers better educate patients on the clinical value of tracking seizure activity in the context of long-term disease management?
Dr. Klein: According to 'Hope, Hesitancy, and Hard Truths: A Patient and Provider Perspective on Epilepsy Treatment', a new national survey supported by SK Life Science, 72% of patients admit they do not report all of their seizures to their health care provider. This finding highlights a critical gap in long-term epilepsy management and underscores the need for more proactive education around the clinical value of accurate seizure tracking.
Providers can help close this gap by clearly communicating that consistent reporting directly influences diagnosis, treatment adjustments, safety planning, and long-term outcomes. Many patients underreport because they fear losing independence, particularly driving privileges, or believe their seizures are ‘not significant enough’ to mention. Reassuring patients that tracking is meant to protect their independence, not limit it, can help shift these perceptions.
Embedding seizure-log reviews into every visit, normalizing open discussion, and offering simple tools such as tracking apps or diaries can further support transparency. When patients understand that the information they share materially guides their care and helps reduce risks, they are more likely to engage and become empowered partners in their treatment journey.
NA: When analyzing the 78% of patients who don’t believe they will ever be seizure-free, did you identify any specific patient profiles or disease durations where this hopelessness becomes most entrenched?
Dr. Klein: While the survey does not break down the 78% of patients who doubt they will ever be seizure-free by disease duration, the attitudes observed suggest that this sense of hopelessness is most entrenched among individuals who have lived with long-standing, uncontrolled seizures or who have experienced multiple unsuccessful treatment attempts.
Patients who have never been explicitly told by their provider that meaningful seizure reduction, or even seizure freedom, may still be attainable often internalize the belief that improvement is unrealistic. When this mindset is paired with the widespread underreporting of seizures found in the survey, it can create a reinforcing cycle: incomplete information leads to treatment plans that appear ineffective, which further strengthens a patient’s perception that ‘nothing will help.’
Over time, these factors contribute to a deeper, more persistent sense of resignation, making it even harder for patients to envision seizure freedom as a possibility.
NA: There is a discrepancy between how often physicians report discussing sudden unexpected death in epilepsy (SUDEP) and how often patients recall these conversations. Does this suggest a need to re-evaluate the timing or frequency of these discussions to improve retention?
Dr. Klein: Yes. The discrepancy between physician reporting and patient recall strongly suggests that we need to re-evaluate both the timing and frequency of SUDEP discussions. While nearly 9 in 10 physicians say they discuss SUDEP, only 63% of patients remember having that conversation, and a notable proportion of patients with daily seizures report never hearing about it at all. This gap indicates that these conversations may be occurring at moments when patients are overwhelmed, such as early in the diagnostic process, or that the information is not being reinforced often enough to be retained.
Improving recall likely requires a more structured, longitudinal approach. Reintroducing SUDEP education periodically throughout the patient journey, using clear and direct language, and pairing the discussion with actionable, personalized steps to reduce risk can make the information more meaningful and memorable. When delivered thoughtfully and reinforced over time, SUDEP conversations become not just informational but empowering, helping patients better understand their risk and participate actively in their own safety.
NA: Based on the trends identified in this survey, what is the single most impactful adjustment a clinician could make to their communication style to improve patient outcomes?
Dr. Klein: Based on the trends identified in this survey, the single most impactful adjustment clinicians can make is to adopt a more structured and intentional communication style that normalizes specific, goal-oriented conversations at every visit. Rather than relying on broad questions like ‘Are you still having seizures?’, clinicians should use concrete prompts that invite full reporting, including brief, subtle, or ‘minor’ events patients often minimize.
Equally important is the consistent reinforcement that meaningful seizure reduction and, for some, seizure freedom, remains an achievable goal. Many patients internalize hopelessness or assume that new options will not help; proactively discussing treatment alternatives and explaining why they may differ from past therapies can reshape expectations.
In short, pairing specificity with proactive, hopeful, and repeated messaging helps patients better understand their disease, report more accurately, and stay engaged in the possibility of improved outcomes.
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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 each month, from 6-7pm! 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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Virginia Epilepsy Support Group
4th Wednesday every month
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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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