Sunday, Mar. 22, 2009

Walk raises awareness, money for epilepsy research

Cindy Valdez remembers the exact moment that she realized her daughter, Cassie, was afflicted with epilepsy — the same condition with which she had struggled her entire life.

“She was diagnosed with epilepsy at the tender age of one, when she had her first two seizures,” Valdez said. “All I can remember from that is my mom sitting on the edge of my bed with a paramedic, because I had just come home from the hospital for having had (a seizure) myself, and I can hear my daughter downstairs screaming.”

Epilepsy is a neurological disorder that affects more than three million people in the United States alone. Characterized by recurring seizures, 25,000 people in the Kansas City area suffer from epilepsy or some kind of seizure disorder.

A 1985 graduate of Olathe South, Cindy Valdez was diagnosed when she was seven months old. Since then, she has experienced approximately 500 seizures in her lifetime, the last was in July 2006.

In 2001, epilepsy claimed Cassie’s life at the age of 12, after a grand mal seizure took her while she slept.

Olathe resident Ann Lorenz has had her own experience with epilepsy, after her daughter was diagnosed during her sophomore year of high school. In 1995, at the suggestion of her daughter’s physician, Lorenz came in contact with the Epilepsy Foundation of Kansas and Western Missouri, and a few years ago she and her family decided to get involved.

Founded in 1955, the local non-profit works to raise public awareness about epilepsy while helping provide medication and emotional assistance to individuals and families struggling with the epilepsy.

There are more than 90,000 individuals within the foundation’s area of influence that need its services, said executive director Sean Taylor. Like all non-profits, however, the Epilepsy Foundation of Western Kansas is struggling to keep up with the declining economy.

Typically, the foundation will pay out approximately $6,000 in medication assistance each month, Taylor explained. An annual budget of $350,000 ensures that such giving is possible, payouts have risen dramatically in recent months. In December alone the foundation distributed more than $13,000 in medication assistance.

“We’re doing okay right now, but we could be one of those in the next few months,” Taylor said, of local non-profits having to make dramatic cuts to services. “This walk is just vitally important for us.”

The “walk” of which Taylor speaks is the 2007 brainchild of Lorenz and a couple of other interested individuals, after a friend heard about the first ever National Walk for Epilepsy being organized in Washington D.C.

It didn’t take Lorenz and Co. long to get to work on their own walk, hoping to raise local dollars to support local families.

Thus, the National Walk for Epilepsy was brought to Kansas City – to Oak Park Mall, specifically – and its rapid growth has been nothing short of remarkable.

Though it started modestly in 2007, with approximately 20 participants raising more than $500, time limitations were a factor.

In 2008, with a full year of fundraising and planning under the organizer’s belts, interest in the local walk exploded – bringing in 241 walkers and raising $40,000 for the cause.

“I was ecstatic,” Lorenz said, of the public response to the 2008 event. “I was really overwhelmed when I saw all of the people that were coming, because of the experiences I had previously – not just with the walk, but with some other things trying to get awareness going.”

This year, despite – or perhaps because of – the economy, Lorenz, Taylor, and the foundation are setting their goal even higher.

On Saturday, March 28 at Oak Park Mall, 11461 W. 95th St., the third annual local National Walk for Epilepsy will take place with a goal of $50,000 in their sights.

It won’t be easy to reach, Taylor said, but the growing need has necessitated the lofty expectations. While corporate sponsorships and individual sign-ups are currently down from 2008, those involved remain hopeful.

“We’re kind of just working on faith right now and hoping people show up the day of the walk, and that we’ll be able to raise the money on that day,” he said.

It’s an important cause, Lorenz said, because it’s a disorder that anyone can develop. Those afflicted with it need help, and those not need to be informed.

That’s something to which Cindy Valdez can readily attest. During her lifetime, she’s heard countless misconceptions about what epilepsy really is, how best to combat its effects, and what someone who has it is – and isn’t – capable of doing on their own.

It’s for those reasons, and in Cassie’s memory, that she takes the life she now leads as a point of personal pride. “Don’t tell me I can’t do something,” Valdez said. “Because I’m going to prove you wrong.”

For more information on the local National Walk for Epilepsy, and to register, visit the event’s Web site at www.walkforepilepsy.org, or contact Sean Taylor at 816-444-2800.

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