Epilepsy groups to expand in Mahoning Valley
By William K. Alcorn
Mahoning Valley Epilepsy is expanding services in Mahoning, Trumbull and Columbiana counties by helping to create support groups in each county for families with children diagnosed with epilepsy.
Mahoning Valley Epilepsy recognizes the need for parents to have a format to share thoughts and concerns for their children with epilepsy and for the kids to have a time to make friends with others who have epilepsy, which is a brain disorder in which a person has repeated seizures (convulsions) over time.
Many times, the general public does not understand about seizure activity nor how to help when a seizure happens, said Janet Mau, the organization’s executive director.
The meetings will feature professional speakers, parents sharing their stories, fun activities and comments from individuals who have had or still have active epilepsy and are living active, productive lives, Mau added.
The groups, all named Raising Awareness for Children with Epilepsy (R.A.C.E.), will meet monthly.
The first meeting of Mahoning County R.A.C.E. is at 6:30 p.m. Sunday at Denny’s Restaurant, 4927 Mahoning Ave., Austintown, said Angela Ruddy of Youngstown, group coordinator.
“My husband, Michael, and I were alone. We didn’t know what to do and who to talk to,” she said after their son was diagnosed with epilepsy.
“Our goal is to get parents acquainted with each other and share information and maybe find someone to call in the middle of the night if you need to; just sit down and talk with somebody who is going through the same thing so you don’t feel abandoned and alone,” Ruddy said.
Trumbull County R.A.C.E.’s first meeting is from 5:30 to 7 p.m. Jan. 26 at the Warren-Trumbull County Public Library in Warren at 444 Mahoning Ave. NW.
“A lot of times, children with epilepsy, especially when they reach their teens, can feel isolated ... feel like they are the only ones,” said Robin Yost of Mecca Township, group coordinator. “This support group will give them a nonthreatening opportunity to talk to their peers in the same situation about everyday life at home and in school.”
The sessions also give parents a chance to exchange ideas and information, she said.
About a dozen people attended the first meeting of Columbiana County R.A.C.E. on Tuesday, said Dana Shaffer of Columbiana, group coordinator.
“The reason my husband and I decided to start the group is because we felt we were in it alone,” Shaffer said. “We needed to get together with other families and their children and get to know each other and exchange ideas and information. One thing works for one and something else for another.”
Shaffer said her group is looking for a permanent location at which to meet.
For more information about R.A.C.E., call Mau at 330-270-8037.