July 5, 2016 was my lucky day. As I walked through the doors of Epilepsy Foundation New England as our new President and CEO, I couldn’t believe my luck to get to serve an organization that makes a real difference in the lives of the 1 in 26 people in our communities who have or will develop epilepsy in the course of their lifetime. Epilepsy affects my family. In fact: two-thirds of the people who work for the Foundation and 80% of our Board Directors have a direct, very personal connection with epilepsy. Our work holds special meaning beyond career goals: it reaches into our own homes and hearts.
Here are the themes we use to serve the 75,000 people New England who have epilepsy.
Community. Epilepsy is not just a disorder: it’s a community. When I met Greg, age 7, at our MA Camp in August, his mom explained that he had never met another child with epilepsy. At our Clambake in Freeport, I sat with Pilar and John and their 10 year old nonverbal daughter, Nina, whose VNS is starting to make a difference in her quality of life. Pilar told me she’d not been in an environment where their family was so accepted and welcomed. “I don’t feel so isolated,” said Lee, one of our support group participants. Among the most important things we do, EFNE builds community through walks, support activities, social programs, camp, and through social media and digital resources.
Service. We are refocusing EFNE to deliver new services to teens; expand our camp programs to more seasons, locations, and ages; develop an employment program that partners with our Donation Center and other corporations to help people with epilepsy get and retain jobs and job skills; relaunch a virtual and phone-based Resource and Support Center; enhance community across our service area; engage volunteers in mentoring, service, and helping programs and services; increase our support of research in epilepsy; implement technology-enabled distance programs for those who cannot travel or who live remotely; increase our family education programs; and more!
Help. Stay tuned for a year of news that highlights our impact not only through new services, but practical help: short-term financial support for people with epilepsy in financial trouble, scholarships for those pursuing education, and expanded financial support for camp programs.
Hope. There is hope in community: you are not alone when you or your family has epilepsy. There is hope in support: we will help you. There is hope every day in groundbreaking research and medical devices and therapies advancing right here in our backyard – a world leader in science. EFNE is Hope: Keep your eyes out for Hope in your neighborhood.
New England. We are working to develop volunteer corps of regional Councils and regional Professional Advisory Boards to ensure that community, service, help, and hope are present throughout Massachusetts, Maine, New Hampshire, and Rhode Island.
You. It’s all for you. Whether you are a person with epilepsy, a family member, a friend – or an employer, health professional, grantor, corporate partner, volunteer - it’s all about you. We exist to serve you, and we exist only with your input and support. I’d love to hear from you. Email, call, or write to let me know how you’re doing, what you need, how we’re doing, with new ideas, or just to say hello.
Welcome to Epilepsy Foundation New England!
President and CEO