Monthly Archives: December 2010

I Went To The SPA Today


A Email

My husband, in the early stages of Huntington's disease, came across
this interesting website,
where members can enter data about an illness from which they suffer,
their history, treatments they've tried, related conditions, etc.
Caregivers can post for their loved ones too ill to post themselves.
Once the site administrators accumulate some data, 
they analyze it to provide results to members.
Raw survey results are available immediately.
They've recently added Huntington's disease to the list for which
they're recording results,
and I'm trying to get more HD families to join and enter data.
Other diseases are listed too (like Parkinson's).
The Huntington's Disease Survey on their site is at:'s%20disease/survey/symptoms/ [1]
To join, you enter your email address and choose a password, 
then confirm membership after they send you an email.
It's free.
They do not sell your name or send you any junk mail.
The creators of this site are responsive to email messages with
comments or requests.
The site is a really nice way to compile information about what drugs
are working,
and conversely, which are not.
Perhaps if the list administrator for the hdmd-group is reading this,
he or she might want to add a link to the site 
to the Caregivers' Alliance website, for all members to use.
Mimi, El Cerrito, CA