Many different paths lead participants to the Rise Above Seizures Walk, a fundraiser for the Epilepsy Foundation of Minnesota which will take place Thursday, Aug. 1, on Park Point in Duluth.
“They come because they have epilepsy, they come because they love someone with epilepsy, they support the mission, they’ve lost someone to epilepsy,” said Lisa Peterson, regional coordinator for the Epilepsy Foundation of Minnesota. “We want people to come and join together regardless of what draws them there and to be supported by a community of people who share in that experience.”
This will be Jessica Kunert’s first walk. The Superior woman's team of 20 will walk for her 3-year-old son, Rebel, who was diagnosed with epilepsy in 2017. Their team is nicknamed “Rebels With a Cause.”
Rebel is obsessed with trains, he loves trucks and he has an emergency kit nearby at all times. Even though epilepsy runs in her mother's side of the family, Rebel's diagnosis changed Kunert's outlook.
“I feel like ever since I found out my son had it, there’s a lot more people that have it than I even knew about,” she said. “I feel everybody should be trained for it.”
Last summer, Peterson led an epilepsy training at Kunert’s workplace, New Horizons Children’s Center in Superior.
“It helped me understand more what (Rebel) was going through and she actually referred me down to the Gillette’s Children’s Hospital too,” Kunert said. “We actually went there for our first appointment last week.”
New Horizons co-worker Jamie Taft has been participating in the walk for the last two years. Taft, who lives in Superior, was diagnosed with epilepsy at age 8. She doesn’t walk to raise funds.
“I’m trying to just raise awareness since not a lot of people know about it,” Taft said.
Over the years, she has seen some people joke about seizures and others freeze when confronted with someone having a seizure.
“It’s something that’s real. It’s not funny,” Taft said. “Do something. Intervene. Help a person who’s having a seizure.”
She said Peterson’s training helped her co-workers understand epilepsy more and even taught her something.
“I learned what to look for in infants, because at the time I was in infant care,” Taft said. “It was nice to learn what to do for a child.”
Funds raised from the walk will be used for local programming to educate, connect and empower people.
Peterson, who lives in the town of Oakland, has led trainings in the Maple and Superior school districts as well as child care centers. Churches, organizations and places of business can also request training. She’s heard from parents and school staff “countless times” that the training helped them recognize that a child had epilepsy.
“We want to be proactive rather than reactive,” Peterson said. “We want people to understand that epilepsy is common. It’s OK to talk about it; it’s OK to recognize what to do.”
Impacting 1 in 26 people
One in 26 people will develop epilepsy in their lifetime and one in 10 will have a seizure, according to the Epilepsy Foundation of Minnesota. It can start at any age. In 70% of the cases, the cause is unknown. The other 30% stem from head injuries, brain infections, lead or alcohol poisoning, a brain abnormality or something genetic.
There are seven different types of seizures, ranging from large-scale muscle jerks or a sudden collapse to a blank stare that begins and ends abruptly. Different responses are needed for each type.
In general, Peterson said, stay calm, don’t restrain the person, move any furniture out of the way, put something soft under their head if necessary.
Peterson herself was diagnosed with epilepsy in high school. Her complex partial seizures left her disoriented and led to gaps in her memory.
“It’s like the GPS gets turned off in the brain,” Peterson said.
She’s been medication free since having surgery 17 years ago and she started volunteering for the Epilepsy Foundation in 2008.
"It was the moment when I realized how many people like me might feel alone in their experience," Peterson said. She wanted to help others navigate education and advocacy opportunities, instead of having to go it alone. That volunteer work led to a full-time staff position.
She encouraged everyone to attend the walk, whether they have a team or not.
“Come and have fun. This is for everybody,” Peterson said. “Come and learn or get more involved.”
The walk begins at 5 p.m. at the Park Point pavilion and beach house, 5000 Minnesota Ave. The event will include food, games and a raffle. All are welcome; preregistration is encouraged. Donations are accepted.