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A fond farewell to long-time Tour de Midnight directors Dennis and Missy Terry
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L: Missy Terry (left) with Tour de Midnight participants
R: Dennis Terry (left) and Gregg Hilmar (right)
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Missy and Dennis go back 11 years with the Epilepsy Foundation of Virginia. They first came to support groups in Virginia Beach, before beginning a new epilepsy support group based in their lovely Williamsburg home.
In 2017, Dennis and Missy took over the annual Tour de Midnight bike ride campaign, re-evaluating and renewing the event and sharing both positives and negatives with EFVA volunteers. Most impressive of all, they were able to lower the bike ride’s overhead costs tremendously while simultaneously recruiting more riders!
In 2020, they changed the singular title sponsorship to a platinum sponsorship- this last year, we had 7 platinum sponsors, which we can attribute to their efforts and hard work.
They also made friends with the organizers of the other bike rides. Because of that, EFVA is glad to introduce and welcome Gregg Hilmar from the Heart of Virginia Bikeride, who has agreed to be Dennis and Missy's successor as the director of the TdM.
Dennis and Missy remain a great officer couple. During their tenure, they insisted on the following:
- No new ideas after April 1st
- During meetings, Dennis talked 90% of the time, with all the others taking the remaining 10%
- If volunteers did not get their work done in time, they received a "code red" behind their name
This style worked! We avoided nonsense ideas and long meetings about nothing, and the codes were an extra incentive.
We are sad that to be losing Dennis and Missy to Florida in February. However, they will remain part of the EFVA family (and Florida is not too far)!
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Thank you Dennis and Missy, from the bottom of our hearts!
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2026 Elizabeth Hart Dalton Memorial Scholarship open for applications
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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.
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2025 scholarship recipients to speak at next Virginia Epilepsy Support Group and Epilepsy Heroes Day
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We are very pleased that the 2025 Elizabeth Hart Dalton Scholarship recipients will be speaking at EFVA events this year! Both recipients were chosen primarily due to their standout essays about living with epilepsy.
In hers, Kiera described her diagnosis:
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"Two days after Christmas, I received one of the worst gifts Santa ever could have given me: an epilepsy diagnosis.
Even though I had unknowingly been living with epilepsy for years, the revelation changed everything for me. Suddenly, I didn’t recognize the girl staring back at me in the mirror. I didn’t know how to act around my parents or friends. I was awkward, unused to my own skin, and it only worsened with the medication. Seizure medication changed the electrochemistry of my brain – that is, it messed me up. For weeks, I battled anxiety and depression, exhaustion to the point of hallucination, and nausea so intense that I became a skeleton because I couldn’t eat. But what was my other option? Stop the medication and let the seizures return?
How I lived my life changed too. I lost my driver’s license, just as senior year picked up and all of my friends were going out. With each passing photo on social media of my classmates living their best lives while I stayed at home because my parents couldn’t drive me, I was increasingly tempted to throw the device across the room. It wasn’t fair, plain and simple. I thought I had done everything right. I had gotten all As, gone to church, never snuck out like others my age. So why was I the one that was cursed with such a blow?
The more I’ve reflected on it, though, the more I’ve marveled at the strength that this epilepsy has given me. Unbeknownst to me, my parents, and my teachers, I’ve struggled to sleep and concentrate well, but has that stopped me? No."
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Messiah describes his courageous attitude as follows:
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"Although Epilepsy has limited me at times physically it has not limited my education. I am so excited to attend college this Fall. A way that I preserved was on May 1, 2025 I was admitted to the hospital in the intensive care unit. I would not stop having seizures and developed fluid on my lungs. Once I was released, I had a different outlook on life and told myself that once I felt better, I would lead every day with a positive outlook. I was able to continue playing lacrosse and well as commit to college and will be attending college in the Fall. I preserved by staying positive through adversity and not letting epilepsy define me."
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Messiah will be a special guest speaker at the online Virginia Epilepsy Support Group at 7pm on January 28th, 2026.
Kiera will be speaking at the Epilepsy Heroes Day Conference on March 21st, 2026, in Norfolk Virginia.
These wise young people will describe their lives at school, how they used their scholarships, and share tips for heroes at school and for the first year at college.
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Flying With Epilepsy: One family's story and airline regulations for epilepsy
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EFVA recently received a story from an epilepsy hero family, detailing a commercial aircraft occurrence that turned a vacation into a stressful and irrational experience. Meg shared her story with us below:
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"Bob and I just returned from a short vacation. We had something happen that honestly was the first time we've (knowingly) experienced stigma regarding Bob's epilepsy, so in the grand scheme of things I'd say we were lucky. But I wanted to make you aware.
What happened was that shortly after we had preboarded onto our Delta flight, Bob had a simple partial seizure. Then afterwards, he had to use the toilet, as he often does after a seizure. He was walking a little wobbly down the aisle, because of a tumble he'd taken in the surf the day before, so I went along to help him. As I was waiting, I casually mentioned to the flight attendant that Bob had had a small seizure but that I'd given him his rescue medication and he was fine.
That proved to be a big mistake! Her eyes got big and she immediately picked up the phone to call the head flight attendant at the front of the plane to report that someone had had a seizure. When we got back to our seats, the head flight attendant came to speak to us and I explained that it had only been a simple partial seizure and that I'd given him Diazepam so it was really no big deal. Nonetheless, she came back in a few minutes and handed me a cellphone to talk to the Delta company nurse.
I again explained the situation and that this was not an unusual occurrence, Bob averages about 30 seizures a month, that we travel regularly and that it's never been a problem. Then the first flight attendant came and handed me a napkin and a pen and asked me to write down all of Bob's medications. After I gave it to her, the head flight attendant came back a few minutes later and handed me her cell phone again. This time I was talking to the Delta company doctor. He went through all of the medications and what they were for. He asked whether I had liquid Diazepam or nasal spray and I told him I had both. I again indicated that I was going to be able to manage it even if Bob had another seizure in flight.
Despite my best attempts, the doctor said that Bob could not be allowed to fly if he'd had a seizure within the previous 90 minutes, Since it had been less than that, they asked us to exit the plane (and sent three people to make sure we did). I asked whether we'd be put on a later flight. They said that they couldn't answer that and that we'd have to work with the gate agent to be rebooked once we were off the plane. It turned out that there were no other available flights until the same flight the next day.
To retrieve our luggage, they said that only I could go with the guard to go back into the customs area and they didn't know how long it would take. They wanted me to leave Bob alone in the busy terminal area, which would have been really unsafe in case he did have another seizure. They didn't like it because they were busy, but I insisted that one of the wheelchair pushers remain with Bob while I was gone. In the end, we got our luggage, we spent an extra night at our destination, and we got home without further incident.
The reason I wanted to reach out to you is because it seemed to me that there was really a lack of awareness and knowledge about the different kinds of seizures and their severity on the part of the people at Delta who were making the decisions about whether we were safe to fly or not. The Foundation's initiative to educate school personnel about epilepsy is certainly more urgent and important, but it seems like educating people in the travel industry might be a useful agenda item in the future."
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EFVA found only the following information, which was confirmed by a Delta spokesperson over the phone:
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Delta Air Lines follows standard aviation industry safety protocols that typically require a 24-hour waiting period after a seizure before a passenger is considered "fit to fly". This requirement is based on safety risks rather than a desire for passengers to fly immediately; in fact, passengers who have had a seizure within 24 hours are often denied boarding unless they have specific medical clearance.
The reasons for this 24-hour policy include:
- Risk of In-Flight Emergency: A seizure occurring mid-flight can lead to a costly and disruptive unscheduled emergency landing (diversion) if the crew cannot determine if the passenger is stable.
- Limited Medical Resources: Aircraft have limited medical equipment and personnel, making it difficult to manage repeated seizures or medical complications that may follow an initial episode.
- Post-Ictal State: After a seizure, passengers may experience confusion, altered mental status, or disruptive behavior, which can be interpreted as a safety threat in a confined cabin environment.
- Medical Clearance Requirements: Delta and other carriers often use the IATA Medical Information Form (MEDIF) to assess if a passenger with a recent neurological event is stable enough for the stressors of air travel, such as changes in cabin pressure or potential sleep deprivation.
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The EFVA is unclear what advantage this policy has, as occurrence of a seizure does not indicate another seizure will occur in 24 hours.
In the medical literature, there are some case studies of cluster seizures, but nothing more than that. After a first unprovoked seizure, about one in four people (27%) will have a second seizure within six months, rising to about one in three (36%) by one year, and roughly two in five (43%) within two years, though risks vary based on individual factors like EEG results or a prior brain injury. A significant portion (over half in some estimates) of those experiencing a first seizure never have another, but the highest risk for recurrence is in the first couple of years.
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Please welcome EFVA's new finance officer Lisa Tuggle!
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Lisa Tuggle was diagnosed with epilepsy after having her first seizure in 2006 at the age of 35. In the intervening years, surgery, medication and the work of various doctors have resulted in the almost complete elimination of her seizures. Lisa became aware of the Epilepsy Foundation of Virginia (EFVA) after seeing a flyer for the Tour de Midnight 2023 in a bike shop, after which she volunteered at the Tour de Midnight in 2023 and 2024.
Lisa has loved assisting the EFVA by raising awareness and providing support to individuals with epilepsy so they can flourish and enjoy life. We are very happy that Lisa will be contributing her talents to the EFVA team as she takes over EFVA's QuickBooks.
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Welcome Lisa, we're so glad to have you!
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Final chance to participate: 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. Eligible participants will have the option to enter a raffle for one of several gift cards.
- You can still participate even if you chose not to move forward with genetic testing.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.
- The survey is one-time, self-administered, and takes about 10 minutes to complete.
Want to learn more? Take the survey here: https://tinyurl.com/mryz4ctf
For more information, email study lead Shelby Flores at millarflorse@vcu.edu.
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Proposals for the 2026 National Epilepsy Foundation Shark Tank Competition close Feburary 6th
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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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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
2026 flyer and info coming soon!
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Virginia Epilepsy Support Group
4th Wednesday every month
Our special guest speaker for January is Messiah Sears, one of the recipients of the 2025 Elizabeth Hart Dalton scholarship!
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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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