Huntington’s Disease Society optimistic for Durham event

The fifth annual three-mile walk around the UNH campus to fundraise for the Huntington’s Disease Society will kick off this Saturday at 10 a.m. Victor Pisinski started the Durham chapter of the walk after his wife, Althea, was diagnosed with the incurable disease 11 years ago. 

The Team Hope Walk, held rain or shine, will depart from the Whittemore Center, and will be followed by food, music and a raffle. Last year’s walk had more than 150 participants, all affected by Huntington’s disease, either personally or through a loved one. Pisinski joked that the weather is one of the worst parts of the event, saying, “It’s like planning a wedding every fall.” 

The walk usually raises about $20,000 a year, and Pisinski said that with the predicted clear skies for Saturday, he is hopeful that this walk will be no different. 

Because there is no cure yet, Huntington’s disease often leaves victims and their families at a loss. Though there are some medications available to help victims cope with their symptoms, there are no treatments to prevent or even slow down the progression.

The Huntington’s Disease Society of America describes the disease as a “genetic stutter in a gene that produces a large protein found in animals from yeast to humans.” It is a hereditary and degenerative disease that affects the brain. As the disease develops, it impacts the person’s ability to function, affecting walking, talking and rationalizing.

Pisinski said his original goal when he started the walk was simply survival. 

“This disease is a nightmare,” he said. “This walk is all about trying to sort things out in your personal life and helping the cause instead of letting it take over your life.” 

According to the Huntington’s Disease Society, Huntington’s is a rare disease. Currently, 30,000 people are diagnosed in the United States, with 4,300 New Hampshire residents with the disease. Each of the siblings and children of those diagnosed have a 50 percent chance of also developing the disease, which impacts another possible 250,000 people. 

This walk is one of six organized fund-raising walks in New England intended to raise money for Huntington’s disease research. Participants can register online to sign up on a team or to walk alone. Registration is free with the option to donate. There are links to contribute money even if you cannot participate. As of Sept. 18, $5,838 had already been raised. Registration at the event begins at 9 a.m. before the start of the walk.

The organization was founded in 1968 by Marjorie Guthrie after her husband, Woody Guthrie, passed away from the disease. 

The research relies heavily on stem cell research and, according to the Huntington’s Disease Society of America, the disease is still not fully understood. Extensive studies on mice and rhesus monkeys has progressed the research. 

Although there is not yet a way to change the gene itself, scientists have begun to find ways to help patients function with the illness. The outlook continues to improve, supporting the organizations promise of “help for today, hope for tomorrow.”

The walk will go through downtown Durham and loop onto UNH’s campus. Not only will local residents participate, the UNH Department of Recreation and rowing team will volunteer their time to help organize the event. Visit www.hdsa.org for information on the disease and research development, or to learn how to make a difference by registering for a walk or donating funds.