By Ginny McCabe
The Huntington’s Disease Society of America’s Ohio Valley Chapter will raise funding and awareness about the disease with its annual Hope Walk, which is slated for this month in West Chester Twp.
“This is an annual event, so it’s been going on for years. It’s our biggest fundraiser for the year for the Ohio Valley, and that spans the Cincinnati region, parts of Northern Kentucky and Eastern Indiana. It’s a regional event, pulling together people raising funds for families and patients with Huntington’s Disease,” said Becca Jacobs, clinical social worker at Gardner Center for Parkinson’s Disease and Movement Disorders at UC Gardner Neuroscience Institute.
“Those funds come back to our local community here to fund our social worker and our support groups, and they help people get connected with additional research and resources, nationally,” she said. “This is how we fund our social worker, which is our main support line for families managing this disease.”
The community social worker works in the community, locally, meeting with families, visiting them at nursing facilities, and helps them with advocacy in the community.
HDSA’s Ohio Valley Chapter will have the Hope Walk on Sunday at the Voice of America MetroPark in West Chester. Participants will return to the park with a new route, and they can choose from two distance options to cover.
“It’s not a run, it’s a walk. It’s really a fun event. Usually, we have a DJ, music and food, and it’s a place for our community to come together and be around other families that are impacted by this rare disease, and find social support and connection, and also do some good fundraising for the community,” Jacobs said.
Huntington’s disease is a fatal genetic disease that affects the nerve cells in the brain and is described as having ALS, Parkinson’s, and Alzheimer’s disease – simultaneously. Today, there are approximately 41,000 symptomatic Americans and more than 200,000 people at risk of inheriting the disease.
It’s a familial disease that’s passed down from generation to generation. It’s carried down from the parents to the children. It’s a progressive disease with no real cure or treatment.
“Our Huntington’s Disease community is very intertwined, and by that, I mean that we have a lot of medical professionals, social workers like myself, we have family members, we have patients that are doing the walk, which is a big deal, because a lot of them have difficulty in walking, or they’re in wheelchairs. So, it’s a huge community event that involves all different kinds of folks that come to this walk, from professionals, down to the patients, and the caregivers as well as people that are at risk for this disease, or that have lost a loved one to this disease. A lot of our community overlaps, so a lot of our medical staff, or researchers are impacted by Huntington’s Disease in their families, themselves. So, it’s a really tight-knit community,” said Jacobs, who lost her father to Huntington’s disease.
It’s important to get people together to combat isolation, and let people know they aren’t facing this terminal neurodegenerative disease on their own, she said.
Team Hope is HDSA’s largest national grassroots fundraising event, which will place in over 100 different cities across the U.S. The event has raised more than $20 million nationally for Huntington’s disease since its inception in 2007.
Thousands of families, friends, co-workers, neighbors, and communities walk together each year to support HDSA’s mission to improve the lives of people affected by Huntington’s disease and their families.