A Brief History of HDAC
The Huntington's Disease Advocacy Center Web site essentially began life in two very popular HD cyber-support groups; the old Massachusetts General
Hospital (MGH) chat room and the HUNT-DIS list service. Marsha Miller and Cristy Wolf were regular (some would say "seasoned") participants and spent many
hours (along with many other seasoned HD veterans) answering questions for newbies to the groups.
After answering many of the same questions over and over, Marsha and Cristy surmised that a Frequently Asked Questions Web page might help some
people get the answers they need more quickly. Fortunately (at least for me) I was one of those newbies and when I heard that they were asking for help
to put the Web page together I raised my cyber-hand and volunteered. I couldn't think of a faster way that I could get up to speed on HD than to
help put together a F.A.Q. Web page.
So Marsha, Cristy and I gathered together in cyberspace to discuss how this might be put together. After we sketched it out I put together a prototype for
of the new FAQ site and we made it public on April 1st, 2000 (yes - April Fools Day).
One of the first features added to the HDAC.org was the list of links to HD related Web sites that I thought would be interesting to our visitors.
At that time useful HD Web sites were hard to find. Now there are so many that it's hard to keep current - but we still try.
Over the years, HDAC grew limbs. I kept playing with various open source plug-ins and developed a few components of my own. The end result
is what you see today. During the course of our growth we also adopted the HDlighthouse.org Web site
and became cyberpartners with Stanford University's HOPE Site.
Our mission with HDAC transitioned from that of a providing a frequently asked question page to a mission of sharing the HD family experience
with others. HD family members meet on our message board to provide assistance and support to each other. It is a forum for those who offer to share their experiences regarding issues
that simply don't have "answers" but rather options to be considered such as feeding tubes, nursing home placement and the like. We consider this an excellent supplement
to a local support group. We have hundreds of stories published by HD family members that provide unbelievable insight into the HD family
experience.
About the Site Caretakers
Marsha's former spouse developed HD and she has a daughter at risk for the disease. Recently her second cousin was also diagnosed in his 80s with late onset HD.
She received a bachelor's in psychology and sociology from the University of Delaware and a Master's and Ph.D. in sociology
from Bryn Mawr College. Formerly an associate professor of sociology, she turned to policy research in 1990 and has been a consultant for nonprofits and state
governments regarding effective programs since 1993. With the unexpected diagnosis of her mother-in-law (the first in her husband's family) in 1997 and her
husband's diagnosis shortly afterwards, she has devoted most of her spare time to HD advocacy.
Marsha is also the shining light of the HDlighthouse.org Web site. She devotes an unbelievable
amount of time to devouring HD research articles with the goal of peeling back the layers of "researcher speak" and sifting through the "marketing fertilizer" so that she can
uncover the real gems of hope for HD families that hide inside.
Although Cristy's boundless energy kept the HDAC site going during it's first few years, she is no longer active in the HD community. Cristy has found new passion in fighting for
patient's rights. Join her in her fight for patients rights at http://www.kaiserthrive.org/.
As for myself, I'm a software developer by profession with a bachelor in computer science, but a Web developer and HD advocate by passion. My ex developed HD and I too have a daughter at risk.
-- Steve Ireland
