About Huntington's Disease
"We are in this fight together"
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About HD

What is HD?

Huntington’s Disease (HD) is a rare, terminal disease that affects roughly 8 in 100,000.  HD is a dominant gene in the fact that not only is it inherited, but those whose parents were affected have a 50% chance that they will be affected.  It is a late on-set disease and individuals who have inherited the gene generally start being symptomatic around their 4th or 5th decade of life.  Prior to that, these individuals lead healthy, normal lives.  Once symptomatic people suffering from HD will have a progressive decline in movement, cognitive, and psychiatric functions.

What are the symptoms?

Symptoms range differently from individual to individual.  However, those with HD tend to suffer from a progressive decline in movement, cognitive, and psychiatric functions.  Those who become symptomatic will eventually die.   On top of that, is the emotional toll that the family endures as they see their once, normal loved one slowly progressing towards death. 

What are treatments?

There are no cures for HD, and no main treatment; although there are some available drugs.  Researchers have been feverishly working on them.  There is strong evidence that exercise and diet play significant roles in keeping symptoms at bay. 

How is HD Diagnosed?

Typically, individuals are diagnosed when there are symptoms and there is evidence of HD in the parents.  This can then be confirmed with a genetic test.  Any individual can get a genetic test.  Those who are pre-symptomatic who have not been tested are considered at risk.  Once tested, if they are negative, then they will not become symptomatic.  Those who are positive, will eventually develop symptoms.  Testing itself is a very difficult decision for most, due to many factors including the possibility of genetic discrimination.  For more information on testing, please go here.

How can I keep up with the latest news on HD?

HD is now, more than ever, "in-your-face".  There are some great sites devoted to HD and research in HD.  Some of our favorites  are the HDSA and the Lighthouse.  We encourage everyone to please visit these sites.  As well as the ones below.

How do I donate?

Where does the money go?

We are not in the money making business.  We are an incorporated nonprofit.  All proceeds will go straight to the
HDSA or other established Huntington's Disease endeavors.