Summer Camp A Welcome Break for Huntington’s Patients, Families..

September 20, 2007

Approximately two dozen people with Huntington’s disease are enjoying some fun in the sun this week, thanks to the efforts of more than 50 volunteers organized by the Huntington’s Disease Society of America.

Friends, family members, medical professionals, church groups and others are donating their time to organize fun and games for patients with the disease, an inherited disorder that affects about 30,000 people in the U.S. The inherited neurodegenerative disorder results in an eventual loss of both mental and physical control. The disease usually strikes in young to mid adulthood, in a patient’s 30s or 40s, and over a span of 10 to 20 years a patient with Huntington’s disease loses the ability to speak, think, and walk.  Currently there is no effective treatment or cure.

At the camp, which runs through Sunday at Rotary Sunshine Camp in Rush, participants are enjoying wagon rides, campfires, movies, barbecues, fishing, baseball, chair volleyball and many other types of games.

Many of the volunteers who make the camp possible come from the Huntington’s Disease Center of Excellence at the University of Rochester Medical Center, which is home to one of the world’s top groups of doctors specializing in Huntington’s disease. The center serves several hundred patients in upstate New York, providing medical care, genetic testing and counseling, and research into new ways to prevent or treat the disease.

“The camp brings back participants to a time in their lives when they enjoyed summer camp as children. They just have fun. And it gives these patients and their families a little time apart, which is so important to renew their energy as they face this disease together,” said nurse Charlyne Hickey, one of several people who created the camp.

This is the 10th year of the camp, which is sponsored by the Upstate New York Chapter of HDSA. The chapter is a resource for patients with Huntington’s disease, and their families, throughout Upstate New York, and sponsors groups in Buffalo, Rochester, and Syracuse.

“For many of the campers, this event is the highlight of their year,” said Tim Kelly, president of the upstate New York chapter of HDSA. “They look forward to participating in the many activities that normally are no longer available to them due the progression of the disease. We are fortunate to have great volunteers who make this event possible.”

In addition to the HDSA Center of Excellence, the University serves as the base of the Huntington Study Group, a non-profit group of Huntington’s disease experts from medical centers throughout North America, Europe and Australia who work together to improve treatment for people affected by the disease.

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