Chronic Disease Self-Management Program (CDSMP) is a self-management education workshop which aims to build participants’ confidence in managing their health and keeping them active and engaged in their life. Participants virtually attend a 1-hour interactive workshop once a week for 6 weeks to learn problem-solving, decision-making, and other techniques for managing problems common to peoplewith epilepsy.
Register today for this FREE 6-week program, which begins Thursday, April 16 at 12:00 p.m. Sessions run for one hour via phone or Zoom. For more information or to register, email Val HERE.
Parents & Caregivers, Let's Connect
Want to meet others caring for a child with epilepsy? Need a place to share your feelings? Then this monthly Support Group is for you! Organized by the mother of an epilepsy warrior here in Delaware, this informal support space will allow parents/caregivers the chance to connect, share and support one another in a judgment-free environment. Monthly attendance is not required - join us when you can. The group will meet this month on Tuesday, April 7 at 7:00 p.m. via Zoom. Please click here to register:
Plan to join EFDE and UD's Epilepsy Awareness Club for a fun evening of bowling and friendship on Saturday, May 2 from 6:00 p.m. to 8:00 p.m. We will be meeting at Bowlero in Wilmington. Bring a friend and your best game for this FREE event. Complimentary food & drinks will also be provided. We look forward to seeing you there!
Do More 24 was a big success, thanks to our generous supporters. In just 24 hours, you helped raise over $1,050 for EFDE, which will be allocated to providing more services, transportation, and support & educational programs, all at no cost, to those living with epilepsy throughout Delaware. Your commitment to making a difference is truly appreciated.
Nancy Hemenway - Matthew Cloud - JPMorgan Chase Foundation - M. Elizabeth Knox - Sue Yamarick - Brian Bartley - Joe Fassano - Debra Sage - Daniel Weile - Denise Budischak - Danielle Winterringer - Christopher Malmstrom - Jeanne McQueen - Incyte Charitable Giving Program
Calling Parents & Caregivers
The Chicago School of Professional Psychology is conducting a research study exploring the psychological effects on the parents/caregivers of children (ages 3 - 18 years old) with pediatric epilepsy. Please consider participating in this 20-30 minute survey and sharing your experiences and well-being as a parent or caregiver. For more information and to access the survey, click here:
A big thank you to everyone who has made a gift to the 2025-2026 EFDE Annual Fund! Your generosity is essential in providing educational and support programs, increasing awareness, and leading advocacy efforts throughout Delaware. We continue providing all services and resources at no charge, thanks to your support. A shout out and thank you to March donors:
Brian Bartley - Joseph Cunningham - Exelon - PayPal Giving Fund - Bayhealth Medical Center
Don’t see your name? Make your gift today and join this fantastic group of supporters.
The Epilepsy Foundation of Delaware was pleased to present Seizure First Aid Training to the following organizations during the month of March:
Crystal Hill School - Delaware Correctional Officers - Burton Childcare Center - Odessa High School Preschool Lab - Smyrna School District Staff - Newark High School Bus Drivers - Delaware State Police
If your workplace or school would benefit from Seizure First Aid Training, contact us to schedule your FREE Zoom or in-person course.
My name is Brian. Even though I have been diagnosed with epilepsy for over 65 years, I have been able to find a life filled with happiness. I had a successful career as an attorney doing a lot of interesting things and being involved in many important cases.
My first memory of epilepsy is remembering waking up as a young boy in the Chelsea Naval Hospital. Both my hands and feet were tied with pieces of cloth to the sides of a medical bed. It was scary! I had experienced a generalized tonic clonic seizure on New Year’s Eve in 1961 in the setting of emotional distress. I was diagnosed with “grand mal” epilepsy, which was characterized by full body convulsions. I was placed on Dilantin and Phenobarbital. Several years later, Valium was substituted for the Phenobarbital. Back in the 60s, a lot less was known about epilepsy. Then there were only two types of epilepsy: grand mal seizures or petit mal seizures. Now there are over 30 types of seizure classifications.
When I was child I had many EEGs, which weren’t pleasant and were scary. I had to take medicine three times a day. Part of my lunchtime recess was spent leaving my classmates to take my medicine. Besides sleepinesses, another side effect of my drug regimen was severe bleeding of my gums. My seizures were grand mal or full body convulsions (now known as tonic-clonic seizures). In retrospect, I was fortunate in that I had relatively few convulsions.
I went through childhood experiencing a lot of stigma and misinformation. For many years, a number of classmates knew of my condition and so I felt very weird, especially since I probably experienced minor seizures in their presence. Also, due to widespread misinformation, I was not allowed to engage in a lot of boyhood activities, such as climbing in trees, playing contact sports or even pickup football with neighborhood kids.
Myths about epilepsy abounded in my childhood years: “restrain him when he is convulsing”, “don’t let him swallow his tongue. . . put something in his mouth” (it’s physically impossible to swallow one’s tongue, which I did not learn until I was well into my adulthood), “something’s wrong with his brain”; some people thought epilepsy was a mental illness.
Epilepsy became less stressful as I matured into adulthood and my tonic clonic seizures disappeared. As my brain developed, epilepsy became more medically, socially and emotionally manageable.
While many young people grow out of their seizures in late teenage years or twenties, I continue to experience “breakthrough “ complex partial seizures from time to time. Several times over my 50+ years I was unable to drive while my medicine levels were adjusted.
Interestingly, my earliest contacts with EFDE came in 2005, not seeking information for myself, but for others. First, in my role as an attorney when I consulted Dr. Chuck Bean for assistance in helping a client. Later that year I consulted a former executive director for information about Women and Epilepsy when I was the Chairperson of the Health Committee of the Delaware Commission for Women. I am so glad that I crossed paths with EFDE twice in 2005!
Not only have I learned a lot about epilepsy, I have been able to be an advocate for those with epilepsy and their families. Since then I have been able to serve as an EFDE Board member, Board President and Vice President, as well as Advocacy Chair. Now I have the pleasure of serving on EFDE’s Professional Advisory Board.
Epilepsy has been a lifelong challenge—but it has also shaped my resilience, my perspective, and my commitment to helping others.
Join EFDE in wishing a veryHappy Birthdayto all celebrating a April Birthday!
Nicole R. - Casey T. - Patrick S. - Joan F.
Ethan A. (Belated March Birthday)
Have an upcoming birthday? Click here to let us know so we can give you a shout out and celebrate you!
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