Date/Time
Date(s) - 09/13/2016
9:00 am to 6:00 pm
Location
Blackstone National Golf Course
We are having a golf tournament at The Blackstone National Golf Course on Tuesday, September 13, 2016 starting at 9:00 AM registration and a shotgun start at 10:00 AM. Dinner to follow at 3:00 PM. Golf for a Cure will raise money to find a cure for Huntington’s Disease!
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 during their prime working years and has no cure.
HD is known as the quintessential family disease because 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. Many describe the symptoms of HD as having ALS, Parkinson’s and Alzheimer’s – simultaneously.
The Huntington’s Disease Society of America
The Huntington’s Disease Society of America (HDSA) is the premier nonprofit 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 families.
HDSA was founded in 1968 by Marjorie Guthrie, the wife of legendary folk singer Woody Guthrie. Woody died from HD complications in 1967 when he was only 55 years old, but the Guthrie family legacy lives on at HDSA to this day.
Across the United States, HDSA currently supports:
- 54 volunteer-led Chapters and Affiliates
- 29 Centers of Excellence that provide an elite multidisciplinary approach to HD care & research
- 40 Social Workers
- More than 170 support groups
Since 1999, HDSA has committed more than $18 million to fund research with the goal of finding effective treatments to slow Huntington’s disease.
Through HDSA produced publications, online news updates and family stories, HDSA is the world’s leader in HD support and education.
HDSA’s incredible advocates have been able to successfully advance legislation and policy to improve the lives of HD families, including the passage of the Genetic Information Nondiscrimination Act (GINA), and having Adult Onset and Juvenile Onset HD be added to the Social Security Administration’s Compassionate Allowances List. Currently, HDSA’s advocates are working towards the passage of the HD Parity Act of 2015, a bill that will help people with HD access crucial disability and healthcare benefits that have been denied for decades.
