Two nonprofit groups advocating for those with Huntington’s disease (HD), HD Reach and the North Carolina Chapter of the Huntington’s Disease Society of America (HDSA-NC), have announced a second daylong educational event for people with HD, their families, and caregivers. This year’s NC HD “Hope for Health, Hope for Life” will be at held the University of North Carolina, Greensboro, on April 2.
HD Reach assists people in accessing healthcare, and in acquiring much-needed disease knowledge and community support. “The HD community does not have the information they need to live well with this devastating disease,” Ann Lassiter, the group’s executive director, said in a press release. “We’ve partnered with HDSA-NC to bring national experts to help people get the resources they need to live well with HD.”
Jimmy Pollard, a caregiver and the award-winner author of “Hurry Up and Wait,” a guidebook for HD caregivers, will be the event’s keynote speaker. Other featured presentations will include the latest developments in HD treatment and care from doctors and researchers at Wake Forest University Medical Center and Duke University Medical Center, plus information sessions directed at young patients and at caregivers, and panel discussions. The sessions will be moderated by Dr. Mary Edmondson of Duke University, the medical director of HD Reach.
The full-day event, which begins with registration and breakfast at 8:30 a.m., will take place at the Elliott University Center on the UNC-G Campus, with free parking and meals provided. HD Reach and HDSA are supporting the event, with the aid of an unrestricted educational grant from Teva and Angels of the Abbey.
“HDSA-NC and HD Reach worked together to bring this special day to the HD community,” said Kathy Martinek, president of HDSA-NC. “We encourage everyone affected by HD to join us to learn all they can about the disease.”
HD is an inherited, progressive, and degenerative brain disease that causes involuntary movements, cognitive deterioration and behavioral instabilities. It currently affects an estimated 30,000 people in the U.S., including 1,000 North Carolinians (with another 5,000 at potential risk). Because HD is an autosomal dominant inherited disease, if one parent carries the faulty gene, each child has a 50 percent likelihood of inheriting the disease, regardless of gender. People at potential risk can attend genetic testing and family planning programs offered by the HDSA.