HD Reach Hosts Huntington’s Disease Education Day in N.C.

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by Mary Chapman |

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HD Reach Education Day

Aiming to raise awareness about Huntington’s disease (HD) while also commemorating a decade of community service, HD Reach presented its annual Education Day April 6 in Raleigh, North Carolina.

Themed “Looking Back, Reaching Forward,” the event was held at the McKimmon Center at North Carolina State University. The non-profit HD Reach works to improve the care and quality of life of North Carolina residents affected by the genetic disorder, which causes the progressive breakdown of brain nerve cells.

Attendees had the opportunity to learn from experts and other speakers  about living life well with HD.

The presentation also included breakout sessions for the Huntington disease community, including those at risk for the disorder, caregivers and youths, while providing much practical information.

HD experts included: Donald C. Lo, PhD, Duke University School of Medicine neurobiology department; Burton L. Scott, MD, PhD, also from Duke; and Francis O. Walker, MD, professor of neurology, Wake Forest School of Medicine.

Sessions included a retrospective of the past decade of HD, as well as:

  • the latest in clinical research
  • the future from a young adult’s perspective;
  • navigating the HD journey;
  • providing care at every HD stage;
  • drumming and wellness;
  • talking to children about Huntington’s;
  • specialty care for at-risk individuals;
  • partnering with therapists;
  • mindful moments, and;
  • detangling the disability application.
  • The day closed with audience questions.

According to an HD Reach press release, promising research and treatment advances notwithstanding, medical care for North Carolina patients and their families is limited in scope and insufficiently supported and coordinated. Education Day seeks to help remedy that.

Susanne Young is a North Carolina resident and caregiver for her husband Bill, an HD patient. “HD Reach has given us a community of support where there are shared experiences,” she said. “We’re so grateful to connect with others who have the unique understanding of what it is like to live a life with Huntington’s disease. They’re such a great source of information, strength and support that we’re not able to find anywhere else,” Young said.

Some 30,000 U.S. residents have Huntington’s disease, and another 200,000 are at risk.