2023 United In Epilepsy Golf Endurance Challenge

The Necastro family's epilepsy journey began in 2019 when Noah was eight years old. They immediately learned of our programs and events from their neurologist, and it quickly became a journey filled with support and education. 

For years, the support came from joining family programs like the annual Walk, Parent Connect Groups, and the Shining Stars program, and the education from monthly webinars covering topics like diet and physical health, epilepsy in school, and stress management.

Most of Noah’s seizures are focal seizures that happen every day, causing him to “zone out” and lose awareness of his surroundings. However, he’s also had six full-body tonic-clonic seizures since his diagnosis.

“We are currently using the Empatica Embrace 2 watch that Noah wears at bedtime. It has been so helpful in giving us peace of mind that we will be alerted when he has a nighttime seizure. We were never able to get a good night’s sleep until we had the watch,” says Lisa.

Feeling secure in this new world is important for Lisa and her husband Brian. Epilepsy has only been part of their life for two and a half years, but they’re already thinking about and preparing Noah for success as he grows.

"Living a 'normal' life has been pretty easy at Noah's age so far, but as he grows, it'll become much more challenging. We worry about when he wants more independence and to spend more time with friends. We are concerned about when he is at driving age. Everything that is part of growing up will be another challenge for us to face as a family," says his dad Brian.

Noah is already feeling confident in what the future holds for him. He’s embraced this new aspect of his life and points to those around him as a big reason for his outlook.

“One thing I’m proud of is feeling like I am overcoming epilepsy — with all the support I have gained along the way has made that possible for me. Teachers, friends, and family have been my ticket out of the stress and the worry. If there was one thing I have learned from my journey, it is that I am not alone and I never have to be,” says Noah. This group, which will continue to grow with the addition of new friends, are there to help him work toward and achieve his goals in life. His parents, and sister Lilah, will of course be the strongest and most consistent supports there for him.

Your support empowers people with epilepsy to manage their seizures and lead the lives they want to lead.

Care

Whether educating people about treatment options, connecting them to transportation or employment services, or referring them to a care specialist, EFMN's Information Services team ensures people with epilepsy have the support they need to navigate life with seizures.

Support

Led by our Regional Outreach team, EFMN's programs for children and youth (Shining Stars, Camp Oz), social events, and peer connect groups reduce isolation, minimize stigma, and build networks of support that are vital to Managing Epilepsy Well.

Access

Working at the state and local level, EFMN is advocating to remove geographic, financial, and social barriers to care, improve access to vital public health services, and increase safety for people with epilepsy at work, in school, and in the community.