If you know me well at all, you know that the Boise Idaho Huntington's Disease Support group is a huge part of my life. I arrived in Idaho in 1994 and shortly after that, as the only genetic counselor in the state, I started offering presymptomatic testing for Huntington's disease. In response to my patients' desire to meet other families with Huntington's, I worked with a student intern to have a pilot meeting in the fall of 2004. We had no idea what to expect, but now 13 years later I cannot imagine my life without all the amazing families I have met. We cry together, we laugh together, we celebrate together. We've watched our kids and grandkids grow up as well as kept up on our pets' exploits and illnesses. And we have tried to have as much fun as possible together. Besides all that, we also fund raise together. This is not because we love fund raising. It is because we love each other and it takes money to get practical support for people with HD. It will also take a lot of money to fund a cure for the research that will bring us better treatments and eventually a cure.
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 family.
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 during their prime working years and has no cure.
Every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.
The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.
Across the United States, HDSA currently supports: • 54 volunteer led Chapters & Affiliates • 41 Centers of Excellence • 65 Social Workers • 160 Support Groups
To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.hdsa.org or call 1-800-345-HDSA.
Please register to walk with me and help make a difference! If you cannot walk with me, please consider making a donation to my personal fundraising page by clicking the ‘Donate’ button at the top of this page.