NONPROFIT SPOTLIGHT: Epilepsy Foundation of Indiana

BY ANGIE ARLINGTON

The mission of the Epilepsy Foundation of Indiana is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives. Specifically, the Foundation seeks to:

1. Connect people to treatment, support and resources

2. Fund innovative research and the training of specialists

3. Educate the public about epilepsy and seizure first aid

“The Indiana chapter supports and mobilizes the epilepsy community through educational activities, direct services, advocacy, and research,” JoJo Gentry, Indiana’s Advisory Board Chair, explains. “It also seeks to educate the general public to better understand epilepsy and seizure disorders, including knowing proper seizure first aid. From groundbreaking research into SUDEP (sudden unexpected death in epilepsy) support, local educational programs, and a 24/7 Helpline, the Epilepsy Foundation of Indiana is here to help.” More than 68,000 People in Indiana are Living with Epilepsy.

THE SUDEP PROGRAM: SUDEP is said to occur when a person with epilepsy dies unexpectedly and was previously in their usual state of health. The death is not known to be related to an accident or seizure emergency such as status epilepticus. When an autopsy is done, no other cause of death can be found. Each year, more than 1 of 1,000 people living with epilepsy die from SUDEP. However, it occurs more frequently in people with epilepsy whose seizures are poorly controlled.

“There is increasing awareness of the dangers of fire and sudden infant death syndrome (SIDS),” JoJo shared. “Yet each year, SUDEP kills more Americans than either of these. The Epilepsy Foundation understands and places a priority on the importance of educating and supporting everyone affected by epilepsy.”

“Unfortunately, [many] people living with epilepsy haven’t heard of SUDEP, which we encourage medical professionals to talk about more often,” she added. “The SUDEP program was formed nationally in 2013 to drive awareness and education for those living with epilepsy, their caregivers, physicians, medical examiners, and the public. The foundation believes that by building awareness and working together, we can prevent SUDEP.”

“The Indiana chapter supports and mobilizes the epilepsy community through educational activities, direct services, advocacy, and research,”

— JOJO GENTRY