Dare to Have Hope

Team Tyler members walk in memory of Nelson “Nelly” Tyler, who passed away from sudden unexpected death in epilepsy at the age of 28.

The Epilepsy Foundation of Kentuckiana is changing lives on a local and national level

By Mariah Kline

Everyone can picture what someone having a seizure looks like. Their body convulsing, eyes rolling back into their head and perhaps even swallowing their own tongue is what comes to mind. However, the idea of a seizure and what someone actually experiences are drastically different.

Debbie McGrath, executive director and co-founder of the Epilepsy Foundation of Kentuckiana, gained first-hand experience when her daughter Victoria was diagnosed with epilepsy at the age of five.

Tiny supporters of the Epilepsy Foundation at the Owensboro Dare to Defeat Walk in 2018.

“We didn’t know anything about epilepsy at the time,” she explained. “I was completely uneducated like most individuals who have no connection to it.”

Victoria was diagnosed in 1988, and at the time, there was only one neurologist in the Louisville area treating pediatric epilepsy. The family spent months searching for the right treatment options and it took an entire year to find a support group.

McGrath and another parent noticed the lack of resources available to children and adults with epilepsy in the Louisville area. In 1989, they met with the National Epilepsy Foundation in Washington D.C., where they learned about several organizations serving families like theirs.

“We wanted that for our community,” McGrath said. “We want to provide programs and services that will hopefully improve lives but also save lives by educating and empowering people.”

The Paducah Dare to Defeat Epilepsy Walk 2018.

For the last 26 years, the Epilepsy Foundation of Kentuckiana has offered access to support groups, educational programs and conferences, travel assistance funds, youth camps and more to children and adults with the disorder. The organization is the only nonprofit in the state that provides these services. Their resources allow those in Kentuckiana to receive the help they need while navigating the medical and emotional journey of diagnosing and treating epilepsy.

“It’s an honor to work with children, adults and their families impacted by epilepsy,” she said. “I gain strength from their resilience and their dedication. They’re looking for treatment options to be able to control the seizures they’re dealing with. Also, knowing that I’ve been on this journey and I know what it’s like, it’s empowering to know what they’re going through and to be able to make a difference for them at the Epilepsy Foundation.”

In their years of experience, McGrath and fellow staff members discovered that many local veterans and active servicemen and women were also in need of help.

“We realized after the conflicts in Afghanistan and Iraq that our military men and women were coming back having sustained traumatic brain injuries and acquiring epilepsy because of them,” she said. “A number of facilities and epilepsy centers were put together by the VA system to help individuals impacted. We have a veteran who works within our office and does work in trying to support the veterans in need and get them connected to the different organizations and support services available to them.”

Victoria and Deb McGrath at the United States Capitol in Washington D.C.

The amount of people who will develop epilepsy in their lifetime is a startling one in 26. What is even more jarring, however, is the number of fatalities related to the disorder. Accidents such as drowning and falls while having a seizure can result in death, but a syndrome called sudden unexpected death in epilepsy is also a risk. This occurs when the sudden burst of electrical activity caused by the seizure stops the body’s heart or the respiratory system.

While the number of people living with this incredibly serious disorder is high, it tragically does not receive the financial backing or respect that other chronic health issues receive. Cliff Vetter took on the role of director of development for the foundation last year and quickly learned how underserved the cause is.

“With more than 2,000 nonprofits in our community, I am beginning to understand how competitive it can be, no matter how worthy the mission,” he said.

Nationally, in terms of research, programs and services funded by the federal government, epilepsy-related causes receive far less funding than similar causes in the United States. McGrath, her colleagues and her daughter Victoria are working to change this by continuing to lobby in Washington D.C. and telling the stories of individuals they know living with epilepsy.

Today, 36-year-old Victoria has three children and works as an occupational therapist.

“We’re one of the fortunate families,” her mother said. “Her story gives hope to others that you can live well with epilepsy. You can define what epilepsy looks like in your life and how you work to control it – whether the seizures are controlled or you just power through and live as well as possible with seizures.”

This month, the Epilepsy Foundation’s largest annual fundraising event will take place throughout Kentucky. The series of Dare to Defeat Epilepsy walks across four cities – June 1 in Owensboro, June 15 in Louisville and June 22 in both Lexington and Paducah – will help raise money and awareness. These events also serve to educate those who may not understand the gravity of seizure disorders and the urgency for treatments and a cure.

“Just because you don’t have a personal relationship with someone affected,” Vetter said, “there are many people who have been (helped) through a medication, diet or a procedure. They’re successfully getting on with their lives, and I think the Epilepsy Foundation of Kentuckiana is an important reason for that.” V

For more information on the organization and the upcoming walks, visit efky.org or call 502.637.4440.

Epilepsy Facts

One in 26 individuals are affected by epilepsy.

150,000 individuals are newly diagnosed with epilepsy each year.

Epilepsy is more prevalent than cerebral palsy, Parkinson’s disease and multiple sclerosis combined.

More than 153,000 Kentuckians have a seizure disorder, which is higher than the national average.

Up to 50 percent of veterans who have sustained traumatic brain injuries may develop post-traumatic epilepsy.

According to the World Health Organization, epilepsy is the most common serious brain disorder with no age, racial, social class, national or geographical boundaries.