An Eastern Jackson County group is working to raise awareness about epilepsy and about resources for those affected by it.
The group, the Purple Peace Foundation, is holding an awareness and fundraising event this Sunday. The Amanda Brady Bowl for Epilepsy & Silent Auction is from 2 p.m. to 5 p.m. at Lunar Bowl, 2001 N.W. Missouri 7. It’s $25 in advance and $30 at the door. Go to www.purplepeacefoundation.org for more information.
Mark and Holly Brady of Oak Grove started the Purple Peace Foundation after their daughter, Amanda, died in 2011. She was 13 and in the eighth grade.
“They took the worst thing that could happen to a parent and did something with it,” said Stacy Perry, who has epilepsy and who spoke at last week’s Grain Valley Partnership luncheon.
“We are a small army of volunteers who do this because we are passionate about it,” she said.
Amanda would have turned 20 today, and the Marriott in downtown Kansas City, which is often lit at night with colors for special events, is set to go purple tonight for Amanda and for awareness.
Perry said epilepsy has no cure and that medicines to control it can have serious side-effects. Generally, neither surgery nor implants will help. It’s hard to live with, she said.
“So it’s a crap shoot,” she said. “It’s not as easy as taking a pill.”
But other resources can help. Perry showed a first-aid poster that can be downloaded from the Epilepsy Foundation. The advice is direct: Most seizures aren’t medical emergencies. During a seizure, get the person on a side and cushion the head. Remove glasses, loosen clothing. Look for a medical alert bracelet. Don’t put anything in the person’s mouth. Time the seizure.
Perry stressed that swallowing one’s tongue is a myth.
“And we want the facts to be every bit as common as the disorder,” she said.
Other breakthroughs can help, such as monitors that work with smartphones.
“That little bit of independence can make a world of difference in someone’s life,” Perry said.