Dear HD Community Member:

As you may know, the Huntington’s Disease Society of America is in the process of updating its Strategic Plan.

The first Strategic Plan guided the Society’s work from 2012 through this year.  During this time HDSA launched new research programs, expanded its advocacy work, nearly doubled the HDSA Center of Excellence program, and increased the community-resources made possible by our social workers, support groups, Helpline and website.  These are just a few of the achievements made possible by following a strong Strategic Plan.

Now, the HDSA National Board of Trustees is asking for your help developing a new five-year plan that will chart the organization’s goals from 2017-2021. 

At the start of this process last summer, the Strategic Planning Committee asked you to share your thoughts on what the Society should be doing.  We asked you to “dream big” and nearly 800 of you participated in the online survey with your needs and inspiration to improve comprehensive care for HD families and move science closer to a cure for HD.  As a result of the feedback, the Committee worked hard to significantly revise the goals and strategies for the next HDSA Strategic Plan.

How did they do?   Please take a few minutes before June 30th to click here to participate in an online survey to review core elements of the new plan.  It should take no more than 15 minutes of your time, but it will shape the fight against HD for the next five years.   You may also download the full draft of the plan at and submit your comments via email to

HDSA has always been a volunteer-led, grassroots, public non-profit.  It is run by you and for you.  Thank you for participating in this survey to shape HDSA’s future, and thank you for all you do to fight HD every day.


Louise Vetter
Chief Executive Officer