Third epilepsy, SUDEP walk to raise awareness

By Josette Keelor

Preventing epileptic seizures is not easy, but organizers of a walk for funding and research in Winchester this month hope to make warning systems more accessible for the one in 26 Americans who will develop epilepsy.

The 3rd STOMP! Out Epilepsy and SUDEP Awareness Walk/Run will take place on the morning of Sept. 21 at the Museum of the Shenandoah Valley in Winchester to raise awareness for the life-threatening condition that more often than not has no diagnosed cause.

More than 65 million people around the world will develop epilepsy at some point in their lives, the National Epilepsy Foundation has reported on its website, http://www.epilepsy.com. More than 2 million are Americans, and, according to the site, 60 percent won’t know what caused their epileptic symptoms.

Steven Shafran, who organized the local walk, said he used to be surprised at the number of people who told him of a close family member or friend affected by epilepsy, but he isn’t surprised anymore.

Because those outside of the epilepsy community are usually unaware of how prevalent the symptoms are, he said he hopes the walk will help change public realization of epilepsy.

In addition to raising funding for individuals with epilepsy, he said, “We are doing this to raise awareness.”

Previously titled Chelsea’s Epilepsy Walk for SUDEP Awareness, the walk remembers 16-year-old Chelsea Hutchison of Littleton, Colorado, who died in 2009 from a seizure while asleep. Her parents Doug and Julie Hutchison knew of Chelsea’s epilepsy, but were unaware of the dangers of SUDEP — Sudden Unexpected Death in Epilepsy — or the medical devices and grant money that might have helped in alerting them to her last seizure in time to save her life.

Shafran, who met the Hutchisons when he lived in Colorado and learned of Chelsea’s death years after moving to Virginia, said her death inspired him to start the walk and help prevent the death of others.

Researching epilepsy, he learned that medical devices and trained dogs can alert others to a seizure victim’s distress. A SmartWatch can be set to alert family, friends or police if and when the wearer has an epileptic seizure, and an Emfit monitor placed under a mattress will sound an alarm to alert those nearby if it detects vibrations suggestive of seizures.

Shafran explained Chelsea’s doctors did not advise her parents about using the alert monitors.

Grant-funded trained seizure dogs are also available to those with epilepsy and are trained to perform various jobs, such as alerting others to a seizure in progress or lying next to a victim to prevent injury.

Though perhaps lifesaving to those with epilepsy, the Epilepsy Foundation’s website says, the dogs are “no different from service dogs for other disabilities.” Researchers are still considering the effectiveness of seizure predicting dogs.

“As a result of what we learned, my wife and I both made a commitment that we were going to do something to help our community and at the same time help Chelsea’s legacy to last forever,” Shafran explained. “She was a beautiful young lady, had great potential and this monstrous evil curse of epilepsy should not have taken her away.”

The walk on Sept. 17 is one of six nationwide walks this month organized through the Chelsea Hutchison Foundation, started by her parents. This year’s goal is to raise $100,000 nationwide.

Individuals can sign up alone or in teams at http://www.chelseasstomp.org.

The walk will begin with registration at 7:30 a.m. followed by a brief program at 8:30 a.m. with a reading of names of community members who have died from epilepsy and the releasing of doves.

Last year, Shafran said, “My wife and I were given the opportunity to hold [a] dove in the name of Chelsea, and it was very emotional,” he said. They observed a moment of silence before releasing the bird.

“Each of these doves really represented an angel that was moving on,” he said.

Contact staff writer Josette Keelor at 540-465-5137, ext. 176, or jkeelor@nvdaily.com