Today, Sail4Epilepsy announced that Epilepsy Foundation New England will be one of its two partners, with Tufts University School of Medicine. Haydon said, “When I first met Susan Linn, the President and CEO of Epilepsy Foundation New England, I knew immediately that this would be a perfect match for the goals of Sail4Epilepsy. Epilepsy Foundation New England aims to improve the lives of individuals and families impacted by epilepsy and seizures. Their mission resonates with the goals of Sail4Epilepsy: through sailing we intend to inspire patients to excel and live life to the fullest.”
Among Epilepsy Foundation New England’s many activities are camps, including adaptive sailing camps in which those with epilepsy are able to get out on the water in sailboats. “Don’t be surprised if you see me at future sailing camps,” Haydon said. Other programs include an Epilepsy Resource and Support Center as well as programs concerning Sudden Unexpected Death in Epilepsy (SUDEP).
“I hid my epilepsy from the world for decades for fear that people – colleagues – would view me differently if they knew I had it. About a decade ago, I decided to start talking about it.”– Phil Haydon
Linn said, “So many people living with epilepsy are afraid to talk about their epilepsy, just like Phil was. Phil’s commitment to shining a light on epilepsy through this global journey is an inspiration, and we are so grateful to be selected as a partner.” Epilepsy Foundation New England is a 501 c3 nonprofit organization that aims to help the 100,000 people affected by epilepsy in Massachusetts, Maine, New Hampshire, and Rhode Island.
At the onset of the Sail4Epilepsy program, a proportion of all funds donated will flow through to Epilepsy Foundation New England and Tufts Medical School. The balance will be used to support the Sail4Epilepsy program, including costs for satellite data transmission time (to upload videos while sailing offshore), docking costs, and boat upgrades for offshore sailing. At the end of the five year program, all assets will be sold and all funds will be donated to Sail4Epilepsy’s nonprofit partners.