Why get involved?

Participating in a support group will help you live well with HD. These support groups will help provide you with support and hope through programs designed to help you:

  • Get involved and learn about advances in Huntington’s disease health care
  • Cope with HD: being at risk, managing symptoms, care giving
  • Learn about resources available to you and your family
  • Connect with other HD families that are living well with HD

Some North Carolina History:

In 1981, Marjorie Guthrie travelled to North Carolina to attend the first meeting of North Carolina families with HD ever held. Marjorie was of course Woody Guthrie’s wife; Woody was a famous folk musician and epic singer-songwriter who died of HD in the 1960’s. It was Marjorie’s strong belief that life could be better for people with HD through knowledge, connection with other families, and better medical care. In the spring of 1981, she brought Nancy Wexler, Ira Shoulson, and George Paulson, all significant contributors to HD research, to North Carolina to support that message.

As a result of Marjorie’s trip, a group of families met and became the first members of the North Carolina HD community. Over the years, these families shared the joys and difficulties of their lives. News of the birth of children and grandchildren, graduations, marriages, divorce, job changes, declining health and loss of loved ones was shared as time passed.

In 1997, a renewed effort to bring families together began, which resulted in the creation of the North Carolina Chapter of the Huntington’s Disease Society of America. Support groups sprang up in Raleigh and Charlotte, and new members were added to the NC HD family. Getting together at fundraising events or board meetings, people shared their successes and challenges, and a common desire to improve the life of people affected by Huntington’s Disease. The North Carolina HD community evolved into an action-oriented, positive and community-centered group of people.

What is the down side of getting involved? Meeting other HD families may shed light on a future that you fear for yourself or your family. The fear of seeing a person at a more advanced stage of disease or talking about your life with another person at-risk can be daunting. You may wonder if there is a benefit to spending your precious time getting involved with other HD families.

But many find that being part of the HD community is like being part of a larger, stronger family, a group of people who understand your feelings and struggles. The good thing about HD is that when you find someone who understands, a bond is created that can be very important and sustaining. Our support groups focus on bringing new, positive ideas to help people with HD live the best lives possible. You will never know unless you come see for yourself if it is for you.

You would be a welcome addition to the NC HD community!