Monday, April 20, 2009
 
 

     

Huntington Project Web Site Closing May 1, 2009

Dear Huntington Project Web Site Visitors,

The Huntington Project was created in 2003 with specific aims in mind:

  1. increase communication within the community
  2. facilitate opportunities for clinical research (COHORT)
  3. provide a forum to evaluate research initiatives (SET-HD)

Happily, the mechanisms for sustaining these processes are in place and are now operating independently. Therefore, we will close the Huntington Project web site in early May 2009.

Thank you for your support and interest.

Sincerely,
(on behalf of the Huntington Project Communications Group)

Awareness and Education
 

 With the active participation of the entire HD community, the Huntington Project will be well positioned to educate and engage the public about HD clinical research and the opportunities for participation at various levels.

About 30,000 people in North America have HD, yet the illness affects entire families and communities, extending its diabolic reach to hundreds of thousands of people. Moreover, advances in the treatment of HD will lead to related advances in the identification and treatment of more common neurodegenerative disorders, including Parkinson’s disease, Alzheimer’s disease, and retinal degeneration. Thus, public support for HD research has the potential to help millions of people worldwide.

In addition, we need to educate the HD community about the importance of participation in clinical trials. Right now, less than 1% of individuals with neurological disorders participate in clinical trials compared with about 50% of those with cancer. Low participation leads to delays in completing trials, and increases the time needed to find a treatment that can make a difference for this debilitating disease.
     
Copyright 2003,2004 by Huntington Project