Resources for families on Huntington's Disease are scarce and, sometimes,
not always accurate. For the thousand of HD families living in rural towns
and cities throughout the United States, often there is no where to turn
to get advice or help as most of the HDSA Chapters or Centers of Excellences
are too far away from them. (As Phil Hardt, HDSA 2001 Person of The Year,
explains it, "those living in the trenches.")
Volunteers had been discussing putting together a Huntington's Disease
Family Resource Guidebook, to list resources in every town in the US
where an HD family might live. This website was the first step in accomplishing
this major task.
I've taken information from every available HD and State website or resource
that I could get my hands on to make this state-by-state listing of resources.
However, I am only one person and don't have the time or the energy to do
The next phase will take your help! It is only through the knowledge you
have gained, through trial and error, in living with HD that provides you with
the information on valuable resources that could help others.
I've included a basic outline of information needed for your state in a the Word
document you can download (below). Please feel free to make suggestions for
additions to this site that you feel will help others!
Any information you can provide on the services listed, based upon your
experience in your town, will be included. You can either fill out the form and
email it back to me or go to the "Guestbook
" section on this website and provide
the information and it will be uploaded to your State page.
Please, discuss this list with other Chapter or support group members as well
as any HD families you know to see what information or suggestions they might
like to see included in this resource.
Together, we can make one of the BEST Huntington's Disease Family Resource
documents available to every family living with Huntington's Disease!
Won't you please help?