By Daniel Gomez
EAU CLAIRE, Wis. (WEAU) - Huntington’s Disease is a genetic condition impacting families in the Chippewa Valley and all around the country.
The Eau Claire Team Hope Walk/Run event brought community members impacted by the disease together to walk to raise awareness and fundraise for a cure to the genetic disease.
“We are here at beautiful Carson Park this Saturday morning,” said Shana Verstegen. She coordinated the Eau Claire event Saturday morning. “Huntington’s disease is a pretty rare, but still enough families.”
Team Hope is a national fundraiser with events in over 100 cities across the U.S. since it started in 2007.
“We have been doing this event about seven years here in Eau Claire, and we have some just really amazing, strong, dedicated families in the Eau Claire area that have been fighting Huntington’s disease,” said Verstegen about the local chapter of the organization.
Those living with Huntington’s Disease, or HD, deal with a what could be described as a “pretty nasty neurological brain disorder. We look at it like a combination of ALS, Alzheimer’s and Parkinson’s.”
These symptoms appear closer to mid life, and progress over the years until it becomes terminal.
“Oh, well, things have slowly been changing. My independence is gone now,” said Mrs. Goldman. She is one of the more than 15,000 Americans living with Huntington’s Disease according to Johns Hopkins in Baltimore, Md.
Huntington’s Disease can also impact loved ones as well.
“It’s affected our family and all of our, you know, everyone in our family. It’s affected everybody. But, you know, we stay strong and we take everything,” said David Goldman
It’s genetic, and because of that, there is a 50% chance a child of someone with Huntington’s disease will inherit it from the parent who carries the defective gene.
“All my kids have not been tested yet,” said Mrs. Goldman
“This is actually the very first one that I’ve actually ever done,” said Beth Eckwright. Saturday’s fundraiser was the first one she has been to. “So when I found out about it, I decided I was going to try it. I’ve never done one, so I figured, why not?”
Her connection to Huntington’s?
“My father was diagnosed with Huntington’s in 2010, I believe. And then my uncle was also diagnosed. My father has since passed.”
Eckwright is glad events like these exist.
“I think it’s great that it stays, you know, locally... Because I know it’s going to help people. It’ll spread more awareness... I raised I did raise some money through my Facebook fundraiser, so which was nice. And then through just regular donations. "
The goal for Saturday’s event was to raise $20,000.
“Right now we’re at about $10,000. So fingers crossed will pull in a few more funds online,” said Verstegen.
And for loved ones supporting those with the disease or those living with Huntington’s like Mrs. Goldman, she has some advice.