Thank you for visiting my Huntington’s Disease Society of America (HDSA) New York City (NYC) Marathon fundraising page! Welcome back to those of you who visited and contributed in 2016!
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 - YET.
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.
The recent drug treatment breakthrough was announced on December 11th last year. The drug, Ionis-HTTRx was announced from University College London. Ionis-HTTRx prevents the toxic protein from being made in the body. While it does not silence the gene, it does suppress it. . Treatment is urgent. The newly diagnosed need it now, and it’s too late for too many. Testing and availability of a new drug takes time.
Yet, we have hope. Hope is more alive now than ever. The finish line is SO close. Efforts like the HDSA NYC Marathon Team have made the dream HD suppression a reality.
I stand amazed at what HD families go through in order to help with finding a cure. They will be studied, interviewed, poked, and examined. They get curious looks in public, and have to answer questions. All while they keep life as normal as possible. All 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.
When they announced the breakthrough 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 one great day in some way to the announcement of a cure is an incredible feeling.
Please join me in contributing to the next announcement of an even better treatment, a cure. No contribution is too small.
*Thank you to those who are brave enough to patiently fight while a cure is just ahead. This marathon is for you.
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.