CBS Greenbay: Walk/Run in Neenah raises money, awareness for rare disease
NEENAH, Wis. (WFRV) – It’s called the Fox Valley Team Hope Walk Run and organizers say it’s appropriately named because its primary purpose is providing hope for families with loved ones battling Huntington’s Disease.
For Kylie Schumacher’s family, their why is simple.
“We’re here to support my mom particularly because she deals with Huntington’s Disease, I know my mom is happier just being around people that she loves and supporting what’s going on around us and other people around her,” said Schumacher.
The Schumachers joined about 100 others on Sunday morning walking or running through Riverside Park in Neenah to raise awareness and money for Huntington’s Disease.
“I know that it affects my family so much so coming out here to support everybody else’s family I know it means a lot to them,” said Schumacher.
Huntington’s Disease is a rare, inherited disease that progressively breaks down nerve cells in the brain causing cognitive, psychiatric and movement disorders.
There currently isn’t a cure for Huntington’s Disease. Every child of a parent with Huntington’s Disease has a 50 percent chance of inheriting it.
About 41,000 Americans have Huntington’s Disease.
The organizer of the walk on Sunday Shana Verstegen said her mother battled Huntington’s disease until she passed away in 2013. Verstegen said attending events like this made her realize that her family wasn’t alone in their battle.
“Sadly Huntington’s Disease is a terminal illness, but it doesn’t mean your life is over when you’re diagnosed and you can still live many amazing years and that’s what these families are doing when they’re coming out to celebrate life,” said Verstegen.
This is the seventh year that organizers have hosted this event at Riverside Park in Neenah. All proceeds from the event go to the Wisconsin Chapter of the Huntington’s Disease Society of America.
Verstegen said they raised about $15,000 this year.
“Nobody really judges and you feel so welcomed and it feels like a community coming out here,” said Schumacher.