BOISE, Idaho —
This story originally appeared in the Idaho Press.
The Boise Team Hope Walk will take place on Saturday at noon at Julius M. Kleiner Memorial Park in Meridian, hosted by the Huntington’s Disease Society of America’s Southern Idaho Affiliate. The event is happening for the first time since being paused by the COVID-19 pandemic.
Huntington’s Disease (HD) is a neurodegenerative disease that kills neurons in the brain and leads to devastating symptoms. Children with a parent who has HD has a 50% chance of inheriting the expanded gene that causes the disease.
“When I found out HD is in my family, it took me a few years to reach out to the support group here in Idaho,” said the HDSA’s Southern Idaho Affiliate Chairperson Sarah Weber. “Getting involved and actually being around people with Huntington's and families with Huntington's has just shown me how resilient humans are.”
This year, the hope walk will still be a little different since it is post-pandemic.
“We're not doing as much as we have in the past,” board member Erica Deshner Cornwall said. “I'm really excited to see what's going to happen because we haven't been able to be together for so long.”
Cornwall started with HDSA in Southern Idaho by simply handing out tickets at an event eight years ago. She quickly found herself working with the society's social media pages.
“I just fell in love with this cause because of the community, the way everybody looks out for each other and learning about this disease,” Cornwall said.
She said the atmosphere in the community and on the hope walk is similar to a family.
“You get all the teams together in that park, and it's always just been a family reunion,” Cornwall said. “It's inspiring from my family. My son would come and show up and participate. My husband comes and participates. And the more you talk about it the more people want to come and participate.”
And Cornwall isn’t the only one who feels that community connection.
“I really enjoy working with the community. I think the HD community is one of the most resourceful communities and welcoming communities...The HDSA slogan is 'family is everything.' And that really is true,” said Brianne Heimbuch, social worker for the Idaho Affiliate of the HDSA. “Once you’re connected, you are family.”
The hope walk, in addition to monthly support group meetings, she said, is a great way to connect with people.
“The hope walk is just a really fun time for the community to get together and for everyone to, again, to just realize that you're not alone,” Heimbuch said. “It's really refreshing to come together as the HD community and just see people living life with Huntington's.”
Heimbuch holds support group meetings for people in the HD community, and said that every time she leads a group, it’s always purposeful.
“Stories can be really heavy. Sometimes because it is a genetic disease, there's often generational difficulties or generational stressors that have occurred,” Heimbuch said. “It is also not a super well-known disease, because the gene was just discovered in 1996.”
Because the gene was just discovered, Heimbuch encourages people to look for newer data when researching HD, to ensure the information is more accurate.
The HDSA in Southern Idaho is looking to reach $16,000 from fundraisers and currently needs about $4,000 to reach that goal, Weber said. The goal of Team Hope Walks is to raise as much money as possible to support HDSA. Those funds are allocated based on need — either to people in Idaho or other families in America, Weber said.
“I just want those that maybe haven't connected with the HD community, to just know that we're here. And know that there are people here that understand,” Heimbuch said. “There are people locally here in Idaho that get it.”
Folks looking to participate in the walk can register at southernidahohdsa.org.
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