Huntington's Disease Society of America
I have now arrived at the time where I can no longer remember my life without Huntington’s Disease as a part of it. I truly don’t believe that it’s my memory failing, but rather that HD is such a part of my life. I have been involved in some way with HDSA for nearly 40 years now having served as the Minnesota Chapter President, on the National Board of Trustees and various committees. I have participated in numerous clinical trials and studies and continue to share the need for this participation as a Clinical Trials Diplomat. While all of this is important in bringing awareness to Huntington’s Disease, the human side is what truly affects me. I lost my dad, my uncles, my grandfather, a young cousin and many friends to HD. My sibling group has now been affected, as well, and I have numerous friends that are fighting the battle. But what really affects me is the continual increase in how many very young people are now succumbing to this ugly disease. It hurts to attend a National Convention and see the increase in numbers on an annual basis. It is simply wrong that so many lives have been shortened because of HD. This is why I continue to bring awareness to the cause – so that generations to come will not know what Huntington’s Disease is; that they will not remember a time with HD in their lives.