Indianapolis is the home of the Indianapolis 500. This year is the 100th anniversary of the famous event. Fans from across the country converge on the city to partake in a time honored event that has gained incredible popularity over the years.
But on February 5th, the event people were attending was not about driving 200 miles per hour. It was about people living with epilepsy who are often driven to the hospital in ambulances or to facilities for EEG testing and surgery or to support groups; many of whom can’t drive themselves because they have lost their licenses due to the disorder.
Leaders from the epilepsy community gathered for their first Community Action Network for Epilepsy discussion. Epilepsy Foundation President and CEO Phil Gattone and Chief Development Officer Vaneeda Bennett joined me to lead the discussion. We were also joined by Senior Leader of the Epilepsy Foundation of Indiana Sandy Pollard, who has been instrumental in providing services, education, and hope to those living with epilepsy and their families across the state of Indiana.
Courageous Stories Create Connection
The room was filled with more than 20 people who have epilepsy or have a family member with epilepsy or who work in the epilepsy field. But all were there for one reason: to make a difference and to create change.
During the meeting, people spoke about why they were there and how they have been impacted by epilepsy. Their stories were compelling and are the basis for the mission of the Epilepsy Foundation.
Those in attendance heard from Danielle, who has epilepsy and leads a support group; 17-year-old Drake, who lives with epilepsy and founded Sack Seizures to create awareness and to educate; Marc, who told us about his daughter and how at 20, she continues to struggle with seizures and the side effects of her medications.
Perhaps the most impactful story came from Donna, who last June lost her 23-year-old son to sudden unexpected death in epilepsy (SUDEP). She continues to fight the battle with her other son who also has epilepsy. It was incredibly emotional, but their stories were inspiring and filled the room with strength and hope.
For the next several hours, the Foundation team described how Awareness, Services, Advancement, and Participation (ASAP) will be the four pillars for the Community Action Network. They outlined the following:
- Awareness and Education for professionals and the general public. Increasing awareness and knowledge about epilepsy and the educational resources and materials offered by the Epilepsy Foundation.
- Service to families through advocacy and supportive care. Informing the community about the programs and services offered by the Epilepsy Foundation.
- Advancement of our mission through programs, new therapy research initiatives, and the CAN groups by fundraising.
- Participation in innovation and legislative advocacy. Engaging CAN members and your community through innovation and advocacy that will inform individuals about treatment options, establish a knowledge base for scientists and researchers, increase our understanding of epilepsy, and support Foundation legislative activities.
They also explained how the lack of volunteers in the epilepsy community is staggering. Phil gave examples such as the MS Society, which has 500,000 volunteers in support of the 400,000 people living with MS in the United States, and the American Cancer Society with 2.5 million volunteers supporting the nearly 14 million people with cancer.
In contrast, the number of epilepsy community volunteers is estimated at 10,000 for the nearly 3 million people living with the disorder. The numbers speak for themselves and the intent is to use the Community Action Network as a springboard to get more people involved.
Overall, the meeting was very encouraging. People left motivated and ready to act. In the coming weeks, those willing to create groups in their cities across Indiana will be inviting others in their communities to participate. The Foundation will be supporting them in their efforts with various resources including people and technology.
A video played during the presentation contained a quote by social activist Dorothy Day, “We have all known the long loneliness and we have learned that the only solution is love and that love comes with community.” When people are diagnosed with epilepsy or parents are told their child has the disorder, they often feel alone and isolated. But the Foundation will inspire people to come together, to speak with a unified message, and to show them that the community can and will build a brighter future for those living with epilepsy and their families.