One Camp at a Time

Jennifer, Jeff , Wrigley and Mara Rubenstein (center) surrounded by photos taken at CCK epilepsy camps throughout the years.

Summer recalls long, leisurely days, family vacations and, for many, memories of new friends and the outdoor fun of summer camps. But if you are a child living with a chronic disorder like epilepsy, summer is more typically filled with doctor visits and long treatments.

Jeff and Jennifer Rubenstein (publishers of Edible Indy) created the Edible Indy Foundation to help offer breathing space for children and their families living with epilepsy. The mission of the foundation is to raise funds through golf outings and donations so families with children living with epilepsy can join a camp designed especially for them. It is a weekend family camp in the fall, where families can have a respite and the children can have a modern camping experience with others who can relate to each other. The camp is part of the year-round program of the Center for Courageous Kids (CCK), a medical camp for families with children living with pediatric illnesses and disorders.

CHANGING PUBLIC PERCEPTION

Jeff Rubenstein, who lived with epilepsy as a child, says that one of the most difficult things about living with epilepsy is the misconceptions surrounding the disorder. He mentioned how some of his peers and even adults thought that epilepsy was contagious, which felt alienating and is false. And even though there’s been progress educating people about epilepsy, the myths have persisted. Jeff gave the recent example of children with epilepsy who have been discouraged from joining sports teams because parents of teammates were concerned about the occurrence of seizures.

It’s a frustrating reality, given that epilepsy is a lot more common than people may realize. According to the Epilepsy Foundation, epilepsy is the fourth-most-common neurological disorder in the world and about 0.6% of children under 18 years have active epilepsy.

Much of the mystery surrounding epilepsy comes from the fact that active epilepsy and its defi ning seizures can take many different forms. This can make diagnosis and treatment especially diffi cult on children with epilepsy and their families.

Alleviating some of the stress of living with a chronic illness or disorder and giving kids the space to play sports and participate in activities free of misconceptions and bias is why CCK exists. And Jennifer stresses that the CCK camp is just as much for the families as it is for the children. “We have seen, first-hand, how parents and other caregivers like grandparents deserve a respite,” she says. “We work directly with individuals and organizations [such as the Epilepsy Foundation of Indiana] to fill this annual camp with 30 Indiana families so they can have that break.”

Over the course of 12 years, the Edible Indy Foundation has raised close to a half million dollars through golf outings and donations, enough to send over 1,000 people to the fall camp at zero cost for the families.

HOW CAN YOU HELP?

The medical camps of the Center for Courageous Kids make it possible for children (up to 18) suffering from a pediatric illness or disorder and their families to experience the fun of a camp designed to accommodate their medical conditions. 

Visit CourageousKids.org to find all information on how to refer a camper or apply to attend a camp. You can also donate directly to the Center for Courageous Kids.

To learn more about the upcoming golf invitational or to donate to the Edible Indy Foundation, visit eventbrite.com/e/2023-applied-underwriters-invitational-benefiting-edible-indy-foundation-tickets-565448119547