“It’s not a race, it’s a walk. It really is a fun event. Usually we have a DJ, music and food, and it’s a place where our community comes together and is with other families affected by this rare disease, and finds social support and connection, and also does great fundraisers for the community,” Jacobs said.
Huntington’s disease is a fatal genetic disease that affects nerve cells in the brain and is described as having ALS, Parkinson’s disease 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 is a family disease that is transmitted from generation to generation. It is transmitted from parents to children. It is a progressive disease with no real cure or treatment.
“Our Huntington’s disease community is very intertwined, and by that I mean we have a lot of medical professionals, social workers like me, we have family members, we have patients who do the walk, which is important because many of them have difficulty walking or are in wheelchairs, so it’s a huge community event that involves all kinds of people who come to this walk, from professionals to patients, to caregivers, as well as those at risk of contracting this disease or who have lost a loved one to this disease. Much of our community overlaps, so many of our medical staff or researchers are themselves affected by Huntington’s disease in their family, so it’s a close-knit community,” said Jacobs, who lost his father to Huntington’s disease.
It’s important to bring people together to fight isolation and let people know they’re not alone with this terminal neurodegenerative disease, she said.
Team Hope is HDSA’s largest national fundraising event, taking place in over 100 different cities across the United States. The event has raised more than $20 million nationally for Huntington’s disease since its inception in 2007.
Thousands of families, friends, colleagues, 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 GET THERE
What: Ohio Valley Team Walk of Hope
Where: Voice of America MetroPark, 7850 VOA Park Drive, West Chester Twp.
When: 10 a.m. Sunday
More information: Contact Lindsay Morrison at [email protected]
