A disease without a cure: dozens show up to Huntington’s disease walk in Neenah

The Huntington's Disease Society of America held a walk in Neenah on Sunday, August 14, 2022.
The Huntington's Disease Society of America held a walk in Neenah on Sunday, August 14, 2022.(WBAY)
Published: Aug. 14, 2022 at 4:24 PM CDT
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NEENAH, Wis. (WBAY) - Doris Shell was joined by her family Sunday morning at Riverside Park in Neenah walking for a cause, and supporting the Huntington’s Disease Society of America.

“I lost my husband due to Huntington’s and I have three at-risk children, and I’ve also recently lost a step-daughter-in-law to Huntington’s, and I feel it’s important to find a cure,” Shell said.

Huntington’s disease currently doesn’t have a cure and according to HDSA, every child of a parent with Huntington’s has a 50/50 chance of inheriting the faulty gene that causes the disease.

“If we can stop this, we wouldn’t lose these wonderful people. It’s a nasty disease, it’s a progressive disease,” Shell said.

“My mom was diagnosed with Huntington’s disease when I was 6-year-old’s and the Huntington’s Disease Society of America helped my family so much,” Shana Verstegen said.

Verstegen is the event coordinator of this walk and having dealt personally with Huntington’s disease, she says her life’s purpose is dedicated to helping others through HDSA.

“Unfortunately my mom passed away in 2013, and the good news is it is a 50 percent chance of having it. I did test negative. My children, I will never have Huntington’s. It’s done in our family, but this has become my life’s purpose,” Verstegen said.

According to HDSA, there are approximately 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.

Experts describe symptoms as a combination of ALS, Parkinson’s, and Alzheimer’s. Most people start showing symptoms of this genetic brain disease between ages 30 and 50.

“It’s just amazing to be able to all get together and enjoy these events. Work toward a good cause, work together to build awareness for HDSA,” Joseph Scala of Appleton said.

The walk’s goal is to raise at least $20,000, so organizers can charge ahead in the fight to find a cure for this destructive disease.

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