By Annie Krall
NEENAH, Wis. (WBAY) - Huntington’s disease is a rare neurological brain disorder that affects someone’s ability to speak, walk, and generally take care of themselves.
It’s a condition that impacts about 500 families in Wisconsin and some of them found a sense of community Sunday during a Hope Walk/Run in Riverside Park through some rainy conditions.
“Huntington’s disease affects a whole village,” Shana Verstegen, event coordinator and Wisconsin Chapter member of the Huntington’s Disease Society of America, said. “It’s not just the person who is sick. It’s their kids who are living at risk. It’s their families who have to take care of them. It’s the whole community that has to raise up and help them.”
Verstegen’s mother died from Huntington’s disease in 2013. Children of someone diagnosed with Huntington’s have a 50% chance of also having the disorder. That’s why walks like these in Neenah which brought families together are so important to fitness instructor and four-time Lumberjack World Champion logroller Verstegen.
“For most of my life I thought that I was not going to be able to use my body,” Verstegen shared. “So, to be able to use my body to be healthy and active and do fun activities has always been such a blessing. Now, to be able to help other people do the same thing and find joy in movement is just a wonderful, wonderful opportunity.”
“Shana is an incredible leader and puts on an incredible event,” the event’s national anthem singer, Joseph Scala, emphasized. “She does amazing work for this organization.”
Deciding whether or not to get tested for Huntington’s disease if your parent has been diagnosed is a very personal choice. Only about 10% of people in that demographic actually get tested, according to Verstegen. She did and was relieved to learn she was negative for the gene defect.
“At first you would think, I would absolutely want to know but a lot of people enjoy that hope that they have of not knowing and trying to live their life,” Verstegen explained. “A lot of us plan as if we’re going to get it. However, live life as if we’re not going to get it.”
The Hope Walk/Run has already raised about $10,000 dollars this year, which is half of their $20,000 goal.