“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.
HOW TO GO
What: Ohio Valley Team Hope Walk
Where: Voice of America MetroPark, 7850 VOA Park Drive, West Chester Twp.
When: 10 a.m. Sunday
More info: Contact Lindsay Morrison at firstname.lastname@example.org