The Huntington’s Disease Society of America (HDSA) is a national nonprofit aiming to find a cure for Huntington’s disease (HD). The organization is the largest of its kind dedicated to bettering the lives of those affected by Huntington’s. In preparation of their annual Halloween-themed fundraising event, we spoke with John Klarer, a board member of the Kentucky chapter of HDSA, to find out more about the mission and fundraising efforts.
“HD is a rare and hereditary neurodegenerative brain disorder that affects a person’s ability to walk, talk and think,” explained Klarer. Symptoms often begin between the ages of 30 and 50 and progress over a 15 to 20 year period. A person in the later stages of HD becomes completely dependent on others for day-to-day care. Currently, there are more than 30,000 people in the U.S living with the disease and 250,000 are at risk.
“From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with Huntington’s disease and their families,” said Klarer. “HDSA’s network of chapters, affiliates, HDSA Centers of Excellence, social workers and support groups provides a seamless connection for help, education and outreach to HD families and health care professionals across the United States. We want to improve the lives of everyone affected by Huntington’s disease and their families. Our vision is a world free of Huntington’s disease.”
Klarer has been personally affected by HD, which is why he became an advocate and board member for HDSA. “I have been a board member for five years,” he said. “My wife Susan passed away (from the disease) in December 2009. My daughter Kaitlin, now 28, is ‘at risk,’ meaning she has a 50 percent chance that she inherited the mutant gene.”
“HDSA currently has 54 volunteer-led chapters and affiliates across the United States with its headquarters in New York City. Chapters and affiliates are tasked with organizing grassroots fundraising and awareness initiatives in their local communities to support HDSA’s mission.”
In terms of the Kentucky chapter, he said, “There is only one part-time paid staff member. Her name is Cathy Saliga, and she is our local, totally awesome social worker. Including myself, we have 15 board members, all of whom are volunteers.”
The Halloween fundraiser will take place on Oct. 27 at Mercury Ballroom and tickets are still available. The annual event includes live music, a cash bar and great food. V-Groove and DJ Mike Ballard will provide entertainment, plus there will be live theatrical performances, fire dancing, stilt walkers and choreographed dances. Costume contests will take place as well with prizes totaling $1,500. All proceeds raised go to supporting HDSA.
The Halloween party isn’t the only fundraising event the Kentucky Chapter holds. “We have an annual walk-a-thon at the Waterfront Park in September of every year,” said Klarer. “I also created ‘Al Capone’ night at the Seelbach’s Rathskeller room. This is a closed, private party fundraiser that showcased itself in July of this year. Our second event will be in February 2019.” VT
Halloween for Huntington’s Disease
8 p.m. to 1 a.m. Oct. 27
Tickets: $35; VIP: $75
Ages 21 and over