Epilepsy Foundation Metropolitan Washington

About Epilepsy Foundation Metropolitan Washington

The Epilepsy Foundation leads the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives. 

The Epilepsy Foundation is a network of local organizations serving people impacted by epilepsy.  The Epilepsy Foundation allows for national reach and scope while also providing local impact.  The Epilepsy Foundation Metropolitan Washington is a Chapter of the national Epilepsy Foundation. The  Metropolitan Washington Chapter provides 24/7 information and referral services, education programs, and support for people with epilepsy, their families, and the community. 

The Epilepsy Foundation Metropolitan Washington is excited to announce that Mary Wontrop has been hired as the executive director.  Mary has more than 15 years of experience with the Epilepsy Foundation and has worked closely with the DC community.     

In order to meet the needs of Metropolitan Washington, we're interested in hearing from you. Please email Mary Wontrop your feedback and input on programs and services needed in Washington DC.  You can reach Mary at mwontrop@efa.org or by calling  301-918-3789. 

 

24/7 Epilepsy & Seizures Helpline:  1-800-332-1000

FREE Online Seizure First Aid Education & Training

Support Groups

Adult Groups and Gatherings

  • Washington DC, 1st and 3rd Thursday of the Month
    New York Ave Presbyterian Church
    Contact: Marc Starnes | 571-278-6524
     
  • Bethesda, Mid- Atlantic Epilepsy and Sleep Center
    Contact: Kayla at spaurk@epilepsydc.com or (301)-530-9744
     
  • Silver Spring, Holy Cross Hospital,  July 11th, Sept 12th Nov 14th
    Contact: 301-754-8800 or visit HolyCrossHealth.org/support.
     
  • Columbia, Savage Volunteer Fire Company,  1st Tuesday Bimonthly.
    Contact: mwontrop@efa.org
     
  • Falls Church, VA   INOVA,  2nd Tuesday of the Month
    Contact: Becky.Schrews@inova.org

Parent Groups

NEW! WASHINGTON DC EPILEPSY MEET UPS

You're invited to SHARE --  Support, Hangout And Relax with other adults with Epilepsy!

WHO:  Adults impacted by seizures.

WHAT:  A casual setting to meet and connect with others.

WHERE:  New York Avenue Presbyterian Church  1313 New York Avenue NW  Washington DC

WHEN:  6 to 7:30 p.m.  |    1st & 3rd Thursdays of each month: 

              Jan 18 | Feb 1 & 15 | March 1 & 15  | April 5 & 19 | May 3 & 17 | June 7 & 21

For more information contact:  Marc Starnes at 571-278-6524

 

My Epilepsy Story... by Marc Starnes

The Path I Least Expected

Marc DC Chapter

It was 1993, and I was a 21 year-old senior at Duke University double majoring in biomedical and electrical engineering.  I was on a full scholarship at Duke after winning a math contest.  I had taught math to gifted kids age 13-16 for four summers on Duke’s campus, studied abroad in London for a semester, squeezed every drop out of my busy college life, and planned to join the Peace Corps after graduation.  Life was amazing.  My biggest stress was rooting for Duke to beat North Carolina in a basketball game.  And I didn’t appreciate all that I had.  Few people appreciate all they have.

On January 12th 1993 my life changed dramatically.  I had a seizure that day, and many more over the next week.  I learned it was from a blood clot in my brain which originated from a car crash in August 1990. My future plans changed immediately…the Peace Corps doesn’t accept people with epilepsy. 

My “big picture” for years was that I couldn’t drive a car, couldn’t drink beers (yes it mattered to me at that age), was told not to swim to avoid drowning, and the list goes on and on.  Playing hoops or other hard exercise often led to seizures, so I stopped playing competitive sports.  During my seizures I would always lose consciousness, shake violently for a couple of minutes (as people told me), and then I couldn’t speak (or type, or walk…) for another 15-20 minutes after the seizure.  I lived with so many unknowns in my life.  I kept seeking answers.  Where to live?  What career to pursue?  Move to DC, NY, or Europe for good public transportation?  Move in with my parents and just complain? 

After undergrad, I went to New Haven CT in 1993 and taught math and coached sports at a private high school.  I wanted to have fun, and to be seen by a nationally known neurologist at Yale.  A year later, after two stays in the Yale Epilepsy Monitoring Unit, I was still having seizures, and tired of cold weather. I moved to Washington DC, to have access to a subway.  Boston, New York, and Chicago, the other American cities with good public transportation, seemed way too cold for a kid who grew up in North Carolina.  Europe seemed too far away.  God I wish internet, Uber, Lyft, and other things existed in 1993, as my options would have exploded.  But it was 1993.

I kept having seizures for two more years while living in DC, teaching high school math, coaching high school basketball and football, dating, eventually meeting my wife, and visiting neurologists at Duke and North Carolina.  I didn’t look far into the future.  I only lived week by week, hoping to improve my life one step at a time.  For six months in 1996 I had a “honeymoon effect” on a seizure med, and had no seizures during that time.  Then I started having seizures again roughly once per month, sometimes twice in a week.  The honeymoon was over.

Despite having made little progress on my seizure disorder, I had become more comfortable with it.  In the Fall of 1996, I decided I wanted to pursue A) grad school and B) reducing my seizures, and that led to me to attending Johns Hopkins School of Public Health (JHSPH) to study Injury Control and Biostatistics, and keep moving “forward” (I hoped) with the treatment of my seizure disorder.  I was trying to make medical progress, and career progress, simultaneously.  I learned I could apply for federal government funding available for disabled people, even though I NEVER refer to myself as disabled.  That funding allowed me to go to grad school basically for free. 

I took classes for four years.  I studied hard.  I got married.  I met repeatedly with my neurologist at Johns Hopkins.  I learned how crappy Baltimore buses were.  Eventually I graduated with two Masters degrees in May 2000.  I kept hoping for a seizure solution, and not finding one.  And again and again and again, I kept having seizures. 

In August of 2000, I took a job as a statistician in DC with the US Dept of Transportation, analyzing car crash data.  Good job…good DC public transportation…good move for me.  Note:  I didn’t choose my job because of my car crash, but instead because it would allow me to use what I’d learned.

On September 28th 2000, after much discussion and angst, I had brain surgery at Johns Hopkins hospital.  They planned to remove the 3 centimeters of my brain that the neurosurgeon said was the “smoking gun.”  He said there was a 65 percent chance that after the surgery I’d stop having regular seizures.  It wasn’t easy to choose surgery, but after years of seizures, I was ready to roll the dice.

A year after surgery I started to drive a car.  Since 2000, I’ve only had 5 seizures.  These were due to things like vomiting my meds while sick, drinking too much water while trying to pass a kidney stone, camping out in the freezing cold (I wear a ski mask now when camping below freezing), or drinking three beers and no water or food at a U2 concert (my stupid fault, will never happen again).  I’m still on (and will remain on) my seizure meds, Keppra and Tegretol.

I’m now happily married to my wife Joey, who has supported me in 5 gillion ways.  We have two girls, Morgan and Marley, in 8th and 5th grade.  I have driven a vehicle regularly since 2001, I’ve played sports, been in water with lifeguards or friends present, and I can now sip some beer or wine with a meal.  My doctor told me before my brain surgery that my word recall was expected to be reduced from the surgery.  He was right, as it is slightly reduced, but I notice it much more than anyone else.  Yes, I forget names, like everyone else does.  When I give speeches at conferences, and I can’t recall a specific statistics word to explain my analysis, I pause, laugh, and move on. 

My favorite phrase is “if you get 5 percent of your life taken away, you treasure the other 95 percent.”  Seizures have made me overall happier, since trivial things don’t make me sad.  I know that sounds crazy, but it’s true.  I’ve seen how many people are pissed at getting the bad parking spot at the mall, being late to a movie.  I want to tell them that is better than having a seizure…but I keep my mouth shut.

Looking back, at age 22, being told “no driving, no beers…” I felt like the world was ending.  Yes I hurt my back from a seizure, and my jaw as well.  But I promise you when you have 5 percent of your life taken away, you can really experience a gain.  That’s not the statistician in me talking, but it’s the person who has been largely changed, for the better and worse, by having seizures. 

Marc Starnes

Marc would like to help others along their epilepsy journey.  If you'd like to contact Marc - you can reach him at:  571-278-6524 or marc.starnes1@gmail.com

 

 

Kids Crew

 

   Check out our KIDS CREW program!!

 

 

 

Please check out our partners at the Epilepsy Foundation Virginia:  www.epilepsyva.com 

 

 

Address and Contact Information

Epilepsy Foundation Metropolitan Washington
1200 G St NW Ste 800
Washington  District Of Columbia  20005-6705
United States
(301) 918-3729
(800) 332-1000

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Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
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