Monthly Archives: September 2010

I am In The Newspaper Again


Me and my Inga are  in the newsaper


The survey is completely anonymous.


 Dear HD Community Member
You have just 3 days left to complete the Project Aware Survey which will help us identify and understand the ways we can ensure that the design of future clinical trials will be more accessible and “user-friendly”.

Please go to: 

and answer the survey questions.

This survey is a joint collaboration with the Huntington Study Group, HDDrugworks and other HD researchers, clinicians and family members in the Project AWARE Survey.
Your answers will make it possible for us to gain the critical insight to improve the design of future clinical trials and observational studies. This will make it easier for our families to participate in trials, and will speed up the recruiting process, which can be very costly to the trial sponsor, and slow up the possible approval of successful therapies.
The survey is completely anonymous.
If you have any questions, please let us know by emailing
Thank you for your assistance in this important process. It’s another way you can make it possible for us to bring Help for Today and Hope for Tomorrow to everyone affected by Huntington’s disease.

Make HD an Election Year Issue


Make HD an Election Year Issue Take Action! 

HDSA Candidate Questionnaire

As you know, 2010 is an election year.  There are more than 1,000 candidates running for the US Congress and we want them to support Huntington’s Disease if elected!

We’ve sent each candidate for Congress a questionnaire about HD . We now want every candidate to return the questionnaire and show their support for the HD Parity Act and people with the disease.

We need your help!  Will you please send an email to the candidates in your area and ask them to return the questionnaire?  All you have to do is customize the message below.  It’s that easy and can make a huge impact.

Please note that the HDSA does not support or oppose any candidates for elective office.  Our goal is to educate them about HD and to ask if they will support us if elected on November 2nd.

Thank you and please contact me if I can be of any help to you.




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