#LetsTalkAboutHD with
Connecticut's Own, Sue McGann
#LetsTalkAboutHD with
Connecticut's Own, Sue McGann
I have known my husband, James, and his family since 1970, when we met in college. At the time, we did not know Huntington’s disease (HD) was in his family. We got married, had kids, and then found out his mother had HD. James’s family did not talk about the disease or its genetic factors. At the time, there wasn’t a test available because the gene had not been identified. So, we carried on and lived our lives.
Then, James’s sister developed symptoms of HD. She died from the disease in 2006 at the age of 63. Around that time, I was laid off from my non-profit position of development director so my daughter decided I needed to volunteer. She contacted Virginia Goolkasian the NE Regional Development Director from HDSA and offered her my services in helping to raise awareness and plan fundraisers. Our Connecticut group would come to have a strong presence and help to lobby for the only state funded HD program in the country, UCONN Health Center’s HD Program. However, at the time, when I started, volunteering there was no local HDSA presence. I then worked with HDSA to reach out to the Connecticut HD community to plan and hold awareness and fundraising events again.
After a few years of volunteering and working with UCONN, my husband decided to get tested. He had no symptoms but wanted to make sure our 2 adult children didn’t have to worry about HD. Unfortunately, he tested positive in December 2009. Our two children have not been tested as of this date. It is their personal choice. Currently, neither of them has any symptoms. My husband is thankfully doing very well. He is still driving and is functioning well at age 72. He is a huge supporter of my volunteer leader role in Connecticut. He also had been involved in clinical trials. His involvement with the Austedo clinical trial led us to speak at several presentations that Teva had at various educational events around the country, mostly virtual.
In 2019, after many years of reaching out to others in the HD community, adding more volunteers to help plan and facilitate fundraising, educational, and awareness events and re-establishing a local presence, HDSA granted the Connecticut Affiliate chapter status. At the 2019 National HDSA Convention in Boston the Connecticut Affiliate won Affiliate of the Year and the award for the Best New Fundraising Event.
I am very proud to be part of the Connecticut Chapter Board and hope I have led them to greatness over the years. We have come a long way since 2006. We have had many successful fundraising, awareness and education events. The most recent success has been the UCONN Health HD Program being designated as the only new HDSA COE in 2024. This has been accomplished due to the collaboration of the UCONN staff and the HDSA Connecticut Chapter. They are excited to be able to reach out to more HD families with enhanced resources.
I personally chair the annual Team Hope Walk, in Killingworth and the annual Music on the Vine fundraising event. My husband and I have been interviewed almost yearly on FOX61 with our THW emcee during May to raise awareness. I have helped to collaborate with the Quinnipiac Frank Netter Medical School Rare Disease Day. I have also been asked to evaluate the new Hospital for Special Care HD Program. I feel so blessed that my husband is still doing so well so I always answer calls from individuals with HD and their relatives with questions and concerns and help them to find the resources they need. My passion and dedication to improving the lives of everyone affected by HD and their families motivates me daily to help others.
-Sue McGann