http://Parkinsonalliance.net/
Thanks to the assistance of some wonderful people, the
Parkinson Alliance has a new site on the WWW. Here's what we
are and why we are:
*********
Mission Statement: To provide a structure to empower
individuals affected by Parkinson's
disease to have a voice in setting the national policy
agenda for research and patient services.
Vision Statement: The Parkinson Alliance is an
action-oriented group of people directly affected by
Parkinson's disease. We include individuals who are
fervently dedicated to finding a cure for Parkinson's
disease and providing patient services, and to that end, we
will develop and maintain a national policy agenda with and
for the Parkinson's community. In unity of purpose we
collaborate with the mainstream Parkinson's organizations
and with people who have Parkinson's disease. Through
state-of-the-art communications at the grass roots level,
we:
advance the national policy agenda;
promote effective coordination among existing
Parkinson's disease organizations;
empower people affected by Parkinson's disease to
make a difference.
***************
This is an important site for all of us. It's a gathering
place for the activist, the PWP stories, the caregiver
stories, the Pallidotomy (and other surgical procedures)
stories and an information and link site to all the other
important PD sites on the web. This new site is not here to
duplicate the information found on other sites, instead we
will enhance and help direct the reader to gather
information about PD.
A quote from Margaret Tuchman:
"A number of people are going to help by providing material
and that is what I
would ask you all to do as well. We need to have a
recognizable, consistent message:
All PWPs and their CarePartners are Members of the Alliance
and therefore All
subjects that touch our lives can and should be presented on
the site.
"The current, most important issue is the appropriation of
the Udall Bill. To
ensure its full funding, the community has work to do. We
must present information that
will help people to call, write, and come to Washington to
be part of the grassroot
activities that the PAN Forum will provide. The website must
be a "One Stop" Udall info center.
"I would like to see many other facets of our daily lives
presented, hopefully
some of them in an inter-active way, thus giving us much
needed info about "who" we
are.
"If anyone has a handy summary of the legislative history of
the Udall bill, it
would be most useful to include it on the site. If you have
creative thoughts, and
suggestions now is a good time to share them. I fully
expect each of you to take an active
part in the maintenance of the site."
This is OUR site, belonging to each and every one of us.
Let's make it work.
--
Jerry Finch
The Parkinson Alliance
http://parkinsonalliance.net/
The Official PWP Dumpster Gang Hideout
http://www.newcountry.nu/pd/
The PWP WebRing
http://www.webring.org/cgi-bin/webring?ring=parkie;list
