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Iowa epilepsy advocates to form youth council

BY HILLARY ROSENCRANTS | APRIL 22, 2013 5:00 AM

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Local advocates say those diagnosed with epilepsy at an early age deserve a support system, and one newly formed group will seek to provide just that.

The Iowa Epilepsy Foundation recently received a $2,500 grant to fund the Iowa Youth Council for Epilepsy. The council will be open to all Iowans between the ages of 13 and 22 who suffer from epilepsy.

Roxanne Cogil, the director of the Iowa branch of the Epilepsy Foundation, said she thinks that this council is a great need for people with epilepsy in Iowa.

“That’s such a difficult time to be diagnosed,” she said.

Cogil said the council is in the planning states, but a preparation session is scheduled for May 10.

The University of Iowa Hospital and Clinics has the only level-four comprehensive epilepsy program in Iowa — meaning that when someone is diagnosed with epilepsy, UIHC provides a greater variety of treatment options.

The Iowa Epilepsy Foundation’s board has 13 members, most of whom were involved in an epilepsy walk in Iowa City this past weekend.

The Iowa Epilepsy Foundation hosted a walk, 5K run, and silent auction in order to raise awareness and funding for epilepsy on April 20, with a meet and greet at the Iowa City Public Library the night before.

This is the first year that there has been a walk for epilepsy in Iowa City and is the only epilepsy walk in Iowa for 2013.

Robert Coons, another Iowa Epilepsy Foundation board member, was also active in last year’s walk in Des Moines.

“Our main goal [for this walk] is to raise awareness for epilepsy and raise funds, which go back to people throughout the community,” he said. “We also want to educate persons and professionals in service programs and first aid for epilepsy.”

Jess Parizek, who was diagnosed with epilepsy 10 years ago, now volunteers actively for the Epilepsy Foundation and attends support groups. She will become an active participant in the Youth Council as a mentor.

“I’ll be glad to talk with [the kids] and share my experiences,” she said. “Hopefully, I can offer some insight so that they won’t make the same mistakes that I did.”

Though the Youth Council is in its infancy, the projected first event will be a fun and educational bowling party for all the kids who are involved.

Parizek not only helped with whatever she could during the walk — including coming early to conduct registration — and participated as well.

“It’s my first-ever 5K,” she said. “And my family walked with me.”

The weekend’s walk coincided with the national Walk for Epilepsy in Washington, D.C.

“We can’t all hop on a plane or a bus and go out to D.C., but we can do this within our own community,” Parizek said.

Roughly 200 people participated in the walk. All the money raised is set to stay in Iowa exclusively, which is an unusual, but happy, circumstance.

“We’re going to be giving scholarships for Camp Oz, and we’re going to keep all the programs we can afloat,” Parizek said.

Camp Oz is a small summer camp in Minnesota that caters to kids with epilepsy and keeps a 24/7 medical staff.

Cogil’s daughter, Rachel, received a hemispherectomy, a rare epilepsy treatment in which one hemisphere of the brain is completely removed. Rachel has been seizure-free since the procedure four years ago.

Cogil said she believes that children such as her daughter deserve a support system of kids their own age.

“I foresee a lot of young adults [with epilepsy] needing slightly older mentors and others to talk to who understand what they’re going through,” she said.

Parizek is hopeful that the group will accomplish what it sets out to do — to educate, support, and reach out to those who attend.

“When I was that age, I was still learning about epilepsy, and what it means to be epileptic,” Parizek said. “It’s nice to have people who understand when I need them. I want other people to have that.”


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