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Meet-ups & Events


Interesting history of NC Support Groups

In 1981, Marjorie Guthrie travelled to North Carolina to attend the very first meeting of North Carolina families with HD. Marjorie was married to Woody Guthrie, a folk musician and epic singer-songwriter who died of HD in the 1960’s. Marjorie held the strong belief that life could be better for people impacted by HD through knowledge, connection with other families, and better medical care. So,in the spring of 1981, three prominent HD researchers, Nancy Wexler, Ira Shoulson, and George Paulson, joined Marjorie in North Carolina to support that message.

As a result of Marjorie’s trip, a group of families met and 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 was made to bring more families together resulting in the creation of the North Carolina Chapter of the Huntington’s Disease Society of America. Support groups sprang up in Raleigh and Charlotte. Getting together at fundraising events or board meetings, people shared their successes and challenges, and a common desire to improve the life of people impacted by Huntington’s Disease. The North Carolina HD community evolved into an action-oriented, positive and community-centered group.

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. When you find someone who understands, a bond is created that can be very important and sustaining. The support group's focus on bringing new ideas to help people with HD live the best lives possible.