On Sunday May 4th, we brought Charting Connections to Rochester, New York, where we worked with host organization Empowering People’s Independence (EPI), a member of Epilepsy Alliance America. The day began in the Eisenhart Auditorium Ballroom, where 35 members of the local epilepsy community and their families gathered together and got to know one another.
After everyone had settled in, EPI kicked off the event with a brief welcome and introduced Phil to the crowd. He spoke a bit about his journey with epilepsy and the ways that he overcame challenges to have a successful career. He told the story of his grandmother and her self-help sayings, in particular “I Can and I Will.”
We then launched into a variety of nautical activities, including knot tying, flag making, and model boat building and racing. After a snack, Phil handed out phrases to each of the tables: Adventure, New Skill, Awareness & Advocacy, Fitness, and Support. He then spoke about his One More Step to live a fuller life, sailing, which we can say definitely falls into the category of Adventure!
Virtual Shipmate Ellie, who lives in the area, then spoke about her One More Step, which was to run a race. She had to overcome her fears of having seizure while running, which had happened when she was alone. She determined safety measures to put in place, which include running with someone or texting someone when she starts her run, so that they can track her as she runs. She is proud that she in fact did compete in a race and has the new goal of running a 5k while pushing her two young children in a stroller.
Phil then challenged everyone in attendance to think of ways they can live a fuller life, with any necessary measures in place. We were thrilled to welcome 16 new shipmates to the crew, with ambitions like finishing college, trying out for a play, riding a bike, hiking, and allowing their child to attend overnight summer camp. We’re so proud of all the goals that were set and can’t wait to hear about the progress.
Click here for the local news coverage surrounding the event and the effects that cuts at the CDC will have on the epilepsy community.
