by Lexie Petrovic (firstname.lastname@example.org)
The 'Team Hope Walk' is the largest national fundraising event for the Huntington's Disease Society of America, or HDSA. Columbia participates in hosting a walk every year but due to the pandemic, Saturday's event will be done virtually.
Huntington's Disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. For this disease- there is no cure.
HDSA reports approximately 41,000 Americans live with Huntington's Disease, affecting more than 6,000 people in Missouri.
The walk encourages people to come out and walk together to draw awareness and support the fight in finding a cure for Huntington's Disease.
Columbia walk coordinator Candace Rodman lost several family members to the disease, including her father.
“I remember in my dad growing up there were small movements he couldn’t control like his hands and feet twitching," Rodman said. "Then it got to his speech being more slurred and trouble walking. It amplified and got worse and worse over time.”
HDSA reports every child of a parent with the disease has a 50% chance of getting it themselves. Doctors can now do genetic testing to determine if a person will live with or without Huntington's Disease.
“Growing up and watching my dad and other family members go through it, knowing it was genetic- I wanted to know," said Rodman. "If it was positive I always said that I would never have kids. That would be me wanting to take one for the team and not spreading a disease.”
Rodman said getting tested is scary: If it comes back positive, you know you are going to live with a fatal disease and if it comes back negative, you can live with survivors' guilt. Rodman said oftentimes people can become suicidal when learning of the positive results.
“There are a lot of people who don’t want to know," Rodman said. "Genetic testing is very difficult to swallow. When they come back the doctor will tell you whether you are going to live or die.”
Rodman said while she is an advocate for genetic testing, it was something her dad said he would rather her not know, as it is difficult for a parent to potentially hear that they passed along a fatal disease to their child.
“The year before he died, I actually told him on his birthday that I had gotten tested and came back negative and we both cried together," she said. "It was happy.”
Rodman said it's important to continue to spread the word about Huntington's Disease and work together in finding a cure. She said the walk is one way to do that.
“I’m hoping that enough of us throughout the city are spread out throughout our neighborhoods and someone sees a neighbor and says, 'Hey come walk with me and I’ll tell you why.' If we are spread out enough to do that then great," Rodman said. "If it brings enough people to post on social media then maybe or social media page will get better and people will be more interested and see it for next year.”
Rodman said typically the cost to join the walk is $25 but this year the walk is free. However, donations are always encouraged to help with research and studies to find a cure for the disease.
“Spread awareness, that’s what we can focus on this year," she said. "Letting people who previously didn’t know about it to show up and to see and ask questions and to hear what we have to say and maybe at that point if they do have spare change to throw our way then even better.”
Saturday's virtual event looks to kick off an in-person Team Hope Walk on September 19th.