LEBANON — The Epilepsy Foundation New England is looking for participants for its first Upper Valley-based Walk for Epilepsy on Saturday (Oct. 12) in Lebanon.
“So far we have about 50 people registered. For our first walk, we’d like to have 100 people,” said Susan Linn, president and CEO of the Massachusetts-based nonprofit organization. “We try to ensure that people living with epilepsy have the support they need to have happy, productive lives.”
In addition to raising money for epilepsy research and programs, the goal is also to “build community connection and awareness for epilepsy” in the Upper Valley.
Registration for the 2.6-mile route along the Northern Rail Trail begins at 10 a.m. at Colburn Park. Participants, who are asked to raise $15-$20 for the walk, receive lunch and a T-shirt.
“I think when people hear the word epilepsy they often will feel afraid. What if someone has a seizure? What if I have to see a seizure?” Linn said, adding that there are 45 different types of epilepsy and the grand mal seizures commonly associated with the disorder affect only a small percentage of the people who have it. “I think another common misconception is people think epilepsy is rare and the truth is that 1 in 26 people will develop epilepsy over the course of their lifetime and 1 in 10 people will have a seizure at one point in their lives.”
In addition to establishing support groups, conducting training workshops for health care providers, giving emergency financial aid and helping people with epilepsy find employment, the Epilepsy Foundation New England also runs summer camp programs for children and teenagers who have the disorder.
Susan Dreyer Leon’s 13-year-old daughter Rosie has participated in the foundation’s programs and has put together a team for the Lebanon walk.
“It’s great for her to get a sense of feeling supported by her community,” Dreyer Leon, of Springfield, Vt., said. “This is her big first fundraising effort.”
The walk also serves as a kickoff for programming that the foundation is bringing to the region in coordination with Dartmouth-Hitchcock Medical Center’s Epilepsy Center. A few AmeriCorp volunteers will establish two Epilepsy foundation programs — Kids Connect, which is for children ages 7-12 and the Young Leaders Network, for high school and college-age students — at DHMC.
“Kids with epilepsy who live in rural areas are often the only kid they know,” Dreyer Leon said. “It can be really isolating. They don’t really have a chance to connect with other kids who have seizures.”
Employees from the Epilepsy Center, including APRN Lindsay Schommer and project coordinator Samantha Schmidt plan to attend the walk to support their patients.
“I think it’s really hard not to work in epilepsy and become extremely passionate about your patients,” Schmidt said.
The Epilepsy Center, which has a level-four certification which means they offer a full range of treatments for epilepsy, including surgery, also has a support group for people with epilepsy and hosts an annual family education day. Schommer and Schmidt both recognize the stigma that surrounds epilepsy, but have also started to see that start to shift.
“The teenagers that I have are much more outspoken and into sharing their experiences,” Schommer said. “I’m really encouraged by that.”
Epilepsy can be hereditary or be caused by a traumatic brain injury. It can affect anyone of any age or gender at any time in their life.
“That’s why I think it’s important to increase viability,” Schommer said. “It’s not just a disease that happens to the other guy.”
In New Hampshire, there are about 2,000 children 18 and under who are living with epilepsy and about 15,000 people total, Linn said. In Vermont, there are about 7,000 people living with epilepsy and of those, about 900 are 18 and under.
“There’s really a big need for supporting epilepsy research. It would make a difference for thousands and thousands of people,” Dreyer Leon said. “I feel like it’s also really important for people to know that people with seizure disorders can lead very normal lives.”
Editor’s note: For more information about the Walk for Epilepsy or to register, visit epilepsynewengland.org. Liz Sauchelli can be reached at esauchelli@vnews.com or 603-727-3221.
