'National Walk for Epilepsy' a Huge Success

Thousands converge on the National Mall for the historic event

By Lisa Boylan
EpilepsyUSA Managing Editor
Posted: April 2, 2007

By all accounts, the first National Walk for Epilepsy was a great success. On a beautiful late March morning, an estimated 5,000 people filled the National Mall in Washington, D.C. to raise awareness about epilepsy and highlight the need for continuing research toward better treatments and an ultimate cure. The national Walk raised close to $1 million toward research and education, thanks in large part to the tireless work of Epilepsy Foundation staff and the support of Ortho-McNeil Neurologics, Inc., the event’s primary sponsor. 

The festivities began the night before at a reception to honor special guests, including Wesley Autrey, the New York City “Subway Hero.” Former congressman and current Foundation chair, Tony Coelho, presented Autrey with a Hero in Epilepsy award, the first of its kind. He then introduced Autrey, lauding his “incredible heroism” for jumping onto the subway tracks in order to save a young man who had fallen during a seizure. Autrey stood at the podium, elegant in a pale gray suit, and recounted an evening he spent with the legendary bluesman, B.B. King. Autrey attended one of his concerts, as his guest. When Autrey went backstage after the show, the 84-year-old King dropped to his knees and said, “Son, you don’t know what you’ve done to and for this country.” Autrey said he came to realize the true impact of his actions and it moved him to tears. He knew then that his mission would be to spread the word about epilepsy.

Denise Torres, vice president of marketing for Ortho-McNeil Neurologics, spoke movingly about her 6-year-old daughter Sierra Madison, who has epilepsy. She recalled her “absolute terror” when Sierra became non-responsive and turned blue during a seizure. She observed that the Epilepsy Foundation and Ortho-McNeil Neurologics share an “inspirational goal to eradicate that feeling—the insecurity, fear, the unknown.” Janet Vergis, president of Ortho-McNeil Neurologics, echoed those words, “Both of our organizations are on a relentless pursuit for a cure for epilepsy, so that one day no one will need to suffer from seizures.”

Epilepsy Foundation vice president of development, Bill Allen, who was integral in planning the large-scale event, arrived on the Mall early in the morning on Saturday, March 31. He noted that the weather was cool, but the skies were clear and it looked like it was going to be a beautiful day. He said, “One thing that can spoil a Walk and spoil attendance is the weather,” so he knew he had at least one hurdle out of the way. What transpired over the next few hours, he said, “exceeded even the experts’ expectations.”

Later in the morning, Walk participants from all over the country congregated on the Mall between the Air and Space Museum and the National Gallery of Art, flanked on either end of the Mall by the Capitol and the Washington Monument. Tony Coelho was ecstatic as he stood at the foot of his longtime workplace, the Capitol, where he authored Americans with Disabilities Act. Coelho called the Walk “fantastic” and said that it was “absolutely a dream come true.” He added, “To see thousands of us marching in Washington DC, in front of the Nations's Capitol—that’s exciting, that’s really exciting! I never thought I’d see anything like this in my lifetime.” 

The moods of participants were similarly bright as people cheerfully made their way down the Mall toward the starting line on Constitution Avenue. Participants were proud to be walking freely along the normally congested Washington streets, now cleared of vehicles, all in support of raising awareness and funds for epilepsy research.

Kids in strollers, wagons and back pack carriers accompanied their parents on the 5K walk. Couples and families held hands and teenagers chatted animatedly to each other and into cell phones.

Dara Snyder attended the Walk with her husband Steve. She was diagnosed with epilepsy when she was 12 years old. Her mother, formerly a concert pianist, also has epilepsy. Dara said, “There isn’t the knowledge, the awareness, the education that we’re just like everyone else. We do need normal lives—even more spectacular lives—because we have been fighting the stigma all of our lives.” She said the time had come for America to “wake up.” She said, “We’re in 2007 and let’s help find better medicines and hopefully a cure.” She added that another incentive for her to attend the Walk was that she waited over 30 years to find a medication to control her seizures. She said, “I don’t want any other person to have to wait 30 years. I want the research for better medications with less severe side effects.”

Ann Barkey-Moss attended the Walk with her daughter Kelly. Ann was diagnosed with epilepsy nine years ago. She said the Walk was important in order to “educate people and let them know that we’re not ashamed about having seizures.” She said, “I know I was embarrassed in the beginning.” Now she says, “I tell as many people as I can to try and educate them.”

Epilepsy Foundation CEO Eric Hargis climbed on the bleachers lining Constitution Avenue to get a better look at the crowd. He said, “I looked back at a sea of white shirts filling the whole avenue—all walking for epilepsy—and it literally took my breath away.”

Margaret Jacobs, epilepsy program director at NIH, had just completed a highly successful two-day conference, Curing Epilepsy 2007: Translating Discoveries into Therapies. She said having the large-scale conference devoted to epilepsy coinciding with the Walk “keeps epilepsy in the public life, first from the research perspective and then from the patient care perspective.”

Families formed teams in support of relatives with epilepsy. One family stood, beyond the finish line, boasting T-shirts emblazoned with Marin’s Light. Bryan Radabaugh said the custom shirts were in honor of his 5-year-old daughter, Marin, who was diagnosed with complex partial seizures a year ago. His brother-in-law, Matt Stella, works for Ortho-McNeil Neurologics, co-sponsor of the Walk. They formed a 12-member team of aunts, uncles and grandparents—from Ohio and Pennsylvania—and all met in Washington for the big day. Matt Stella said forming the team in honor of his niece was a “no-brainer.” He said they wanted to show “what she means to us and what a bright light she is in our family.” He added, “She’s a wonderful, amazing, beautiful little girl and it’s the least we could all do. It made this very worthwhile.” The team raised $5,000 for epilepsy research and education.

People strolled along the stately avenues, amid all the spring colors and fragrances, in a buoyant procession of white shirts, talking, gesturing and smiling as they made their way to the finish line, where they basked in the pride of finally bringing epilepsy out of the shadows and into the welcoming daylight.