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Posted August 30, 2013 | comments Leave a comment

Support for local epilepsy walk/run grows

By Kim Walter

Close to a year after holding Winchester's first walk to benefit the Chelsea Hutchison Foundation, Steven Shafran said he is confident that the local movement to raise awareness for Sudden Unexpected Death in Epilepsy is heading in a positive direction.

Julie and Doug Hutchison formed the nonprofit foundation, based in Colorado, in 2009 after their 16-year-old daughter Chelsea died in her sleep during a seizure. Prior to her death, Chelsea's epilepsy was well managed and medicated, and her parents had never received any information or warning about SUDEP.

The Hutchison family decided to form the foundation as a way to raise SUDEP awareness so that other families are not blindsided by such an outcome. Additionally, the foundation raises funds to provide grants that assist in seizure protection through the use of seizure-response dogs and movement detectors.

Shafran and his wife Carol, who were family friends of the Hutchisons, established Winchester's chapter of the foundation last year. They also managed to hold a walk, which brought out more participants than the couple could have imagined.

Over the past 12 months, Shafran said he continues to be surprised by the number of local families affected by SUDEP. However, he said that only solidifies the need for a chapter in the region.

"I have been overwhelmed by the support we've received," he said Friday morning. "But it just goes to show that last year's event wasn't a one-time accident ... we knew right away we had to start planning for bigger and better things."

So far, a number of major corporations, including Target, Kohl's, Best Buy, Wells Fargo and others, have donated funds, material and volunteers to the chapter.

The second annual Chelsea's Epilepsy 5K Walk/Run will take place Sept. 22 at Blandy Experimental Farm in Boyce. Those interested can participate as an individual or as part of a team. Entertainment, drawings, food and festivities will begin immediately after the event.

The chapter is holding a new event this year on Sept. 8 at the Alamo Drafthouse Theater -- a "Night at the Movies" to benefit the Chelsea Hutchison Foundation. The family event includes a showing of the movie "Night at the Museum," a silent auction and other activities.

Shafran said the movie selection was on purpose. The summer before Chelsea passed away, her family took her to New York City to visit the Museum of Natural History, which she loved.

"I talked to Chelsea's mom to figure out what movie to show, and she felt like "Night at the Museum" was perfect," he said. "Not only does it make her think of her daughter, but it also fits in with the family friendly atmosphere we're going for."

Shafran has spent a lot of time reaching out to local schools as well. By presenting to different clubs over the next few months, he said he hopes to spark even more of a community-wide SUDEP awareness.

Any and all funds raised by the chapter go toward providing educational resources pertaining to SUDEP, as well as providing families with seizure-response dogs, and devices like EMFIT and the Smart Watch.

The EMFIT device goes under a person's pillow so that if he or she has a seizure during the night, the motion can be detected and trigger an alarm. The Smart Watch is similar, except a person wears it during the day in case of a seizure and no one else is around.

Involving the local community support even more, Shafran has requested an appointment with Sen. Jill Vogel in hopes of convincing her to introduce a bill that would require doctors to educate their patients on SUDEP.

"Think about the paper work you have to sign just to pick up a simple, over the counter prescription," he said. "Even if there's a slim chance of something going wrong, it's important to be informed. Why should epilepsy and SUDEP be any different?"

Shafran said he would love to see a license plate option for people with epilepsy, similar to options advocating for diabetes awareness.

"I, like many others, want this hidden disease of epilepsy to come out of the closet," he said. "And I would love to see our community be a leader in the state and nation for SUDEP awareness."

For more information on upcoming events for the Winchester chapter of the Chelsea Hutchison Foundation, email Shafran at spshafran@gmail.com. To learn more about SUDEP and the foundation, go to www.chelseahutchisonfoundation.org.

Contact staff writer Kim Walter at 540-465-5137 ext. 191, or kwalter@nvdaily.com


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