I learned about HD the night I met the man who would eventually become my husband, Don. Like any other first coffee, we discussed our backgrounds, our children, and our eclectic taste in music. Then Don mentioned HD, and how it was taking a toll on his father’s life. He told me how he too is at a 50% risk of the disease, and how it moves from generation to generation. I had no clue about HD, but learned a lot on Google. Three months later, I met Don’s father (Don Sr.) and his wonderful family. Don Sr.’s eyes were very kind and blue like Don’s. He really wanted to speak, but HD did not allow it. Don’s father passed the following month.
Don is the oldest of 5 sons. Don Sr. raised gentlemen of character. These are the kind of guys who serve our community. They are police officers, builders, managers and construction. Since Don’s father passed away, two out of five sons are confirmed to be positive of the gene that causes HD. They were confirmations came after symptoms became so overwhelming that they had to get tested. Symptoms of this disease stop great careers, remove independence, change relationships, and take away your mental and physical abilities. The list goes on. No one in a family at risk can look at their future with fresh eyes when HD is lurking.
As some of you know, this is my second attempt to run with the HDSA NYC Marathon Team. For those who don’t know, my first attempt ended after an emergency surgery back in May of 2016. As rough as that was, I have recovered and running (albeit slower) again. Huntington’s Disease (HD) doesn’t work like that, there is no recovery.
The HD conversation in my home has been a bit of a rollercoaster lately. My husband Don is the oldest of 5 brothers at risk after losing their father to HD in 2006. Two of his brothers are now confirmed to have inherited the HD gene while the other 3 remain at risk. Celebration of a treatment breakthrough turned to deep upset when yet another much loved family member was diagnosed with a self-described “gut punch” diagnosis this month. While the recent treatment breakthrough was exciting, it is not a cure and comes too late for too many. It is not too late for future generations.
Symptoms are described by HDSA as “… like having ALS, Parkinson’s and Alzheimer’s all at once. It deteriorates a person's physical and mental abilities during their prime working years and has no cure.” With every new diagnosis, their children now receive a 50:50 chance of inheriting the gene and on it goes.
When a treatment breakthrough was announced in December, it was an incredible feeling to know that contributions from the 2016 attempt at running NYC with HDSA were a part of it. To know that this race will contribute in some way to the announcement of a cure is an incredible feeling.
Aside from the hunt for a cure, donations also go toward making the lives of HD families better. HDSA helps families with advocacy and community services to include education to others who may not understand symptoms (law enforcement, the public, and loved ones). HDSA has brought HD to light and out of the dark where families had to hide. It is only in the light a cure can be found.
*This final marathon is for Keith
What is the Huntington’s Disease Society of America? The Huntington’s Disease Society of America is the premier not-for-profit organization dedicated to improving the lives of everyone affected by Huntington’s disease. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today, hope for tomorrow for people with Huntington’s disease and their families. To learn more, please visit www.hdsa.org. What is Huntington’s Disease? Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes the disease. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.