By Eric Richards
NEENAH, Wis. (WFRV)- The Wisconsin Chapter of Huntington’s Disease held its annual run/walk to raise funds and awareness of the disease that many people might not know about, but may have unknowingly been impacted by the disease in some way.
“It’s a rare disease, yet a lot of people know somebody who has it,” said Shana Verstegen. Shana’s mom was diagnosed with Huntington’s Disease in 1986 and has since passed away. “It’s a nasty disease,” said Shana.
Huntington’s Disease is a hereditary and fatal progressive brain disorder that breaks down nerve cells. “All children with parents who have Huntington’s Disease have a 50 percent chance of inheriting it,” said Shana.
Shana tells Local 5 that she and her two children were tested and they tested negative for the disease. “It’s awful and strikes people in the prime of their life,” said Shana.
Melissa Giordana of Appleton shared with Local 5 that she has had a number of family members affected by the disease. “For my family, it has affected four of us, from my mother down to my siblings,” said Melissa.
Melissa, who was adopted, didn’t inherit the disease directly, but she says seeing her loved ones with the disease has deeply affected her. “We have a responsibility to find a cure and care for our loved ones,” said Melissa.
Her sister, who has been living with the disease for some time now was also in attendance for the annual run/walk. “We’re walking for her and doing our due diligence to keep this going and raise money,” said Melissa.
The Fox Valley Team Hope run/walk’s goal is to raise $20,000 to go towards finding a cure and assistance for families dealing with Huntington’s Disease. Organizers tell us that they have raised about half of that so far.