Hello,
I thought I'd share the following announcement that I found on the MGH Forum. I
hope that you will all try to get involved in advocacy in some way, even if you
don't attend the forum in June. It is our lives that is at stake, and I feel that
empowering oneself to fight for our future is a very rewarding and fulfilling
experience. I will also share a piece that I wrote for our regional support group
organization's quarterly newletter (PPSG, Peninsula Parkinson's Support Groups).
The Parkinson's advocacy movement has made enormous strides in recent years. This
success is the result of understanding how public policy
decisions are made, promoting
the promise of research, and mobilizing a national network
of advocates.
The Parkinson's Action Network's annual Public Policy Forum
provides advocates the
knowledge and tools to effectively focus national attention
on Parkinson's disease. The
Forum is the only event in the country that trains and
empowers advocates on issues
surrounding Parkinson's disease. For the past six years,
Parkinson's advocates from
across the country have gathered in Washington, DC to hear
the latest developments in
Parkinson's research and advance their knowledge of public
policy.
This year's Forum will offer a wide array of plenary and
workshop sessions to provide
current information on the legislative agenda and
priorities of the Parkinson's community.
FORUM GOALS:
TRAIN Parkinson's advocates to fight for increased federal
funding for Parkinson's
research and other important public policy changes
DEVELOP an organized grassroots advocacy network that can
mobilize on behalf of the
Parkinson's legislative agenda
RAISE the visibility and put a human face on Parkinson's
disease for lawmakers and the
public
HELP keep pressure on Congress to make public funding for
Parkinson's research a top
Congressional priority for fiscal year 2001 and beyond
FORUM HIGHLIGHTS:
CAPITOL HILL briefing by leading scientists on the promise
of Parkinson's research
PLENARY session on "Legislative Priorities and Goals for
Funding Parkinson's Research"
PLENARY sessions on the exciting Parkinson's research
program at the Department of
Defense
WORKSHOPS on strategies for effective lobbying, building a
grassroots movement,
Congress and the legislative process
FISHMAN AWARDS DINNER honoring outstanding advocates
LUNCHEON with syndicated columnist Jack Anderson
ANNUAL Parkinson's Lobby Day on Capitol Hill
To receive a Forum registration packet, please call the
Parkinson's Action Network at
800-850-4726 and ask for Kathy.
--------------------------
WHY BECOME AN ADVOCATE?
I went to Washington Last June to hear the top scientists present their current
work, the latest in exciting research for Parkinson's Disease, and to learn about
policy issues, the process and skills of lobbying, the process of passing
legislation, and how funds are appropriated. I was nothing short of "electrified;"
I've been
an enthusiastic advocate ever since, spending lots of time: brainstorming with other
advocates, disseminating information and news to my region here in the Bay
Area, and other Western and California locals, writing letters to the editor on
advocacy and PD awareness, writing, calling, e-mailing, faxing, and visiting Senate
and House Congressional Representatives locally, at their offices and town hall
meetings, and in Washington, as well as getting others to do some of the same.
There is a lot to do, but I find it rewarding, exciting, yes, frustrating, but
intensely interesting. Why?
Because it has been declared by the top researchers from across academia that
Parkinson's Disease is the closest to being cured of all the neurological diseases.
Because I, and advocates like me, want to speed up a cure for Parkinson's. Because
I'm the third generation in my family to get PD, and because I don't want my
son, or anyone else's children to get PD. Because there is still very little
Parkinson's public awareness and knowledge about PD, while many misconceptions
about this devastating disease still exist. For example, Parkinson's occurs
entirely in people over 60. Actually, people get PD as young as 8, and as many as
40% are under 60, and approximately 30% are under 50.
If you have a reason to participate, visit the PAN web site to find out how to get
involved, or call me if you wish. You can do it. We can, we do, and we will
advance a cure for PD.
Please visit the PAN web site: http://www.parkinsonsaction.org to get first hand
information on what PAN is about, materials that support advocacy locally, the
annual Public Policy Forum held in Washington every year, and much, much more.
The following passages are from PAN's web site:
The Parkinson's Action Network's
Seventh Annual Public Policy
Forum
Mark your calendar now for
June 25-27, 2000!
The Parkinson's Action Network's Annual
Public Policy Forum provides advocates the
knowledge and tools to effectively focus
national attention on Parkinson's disease.
The Forum is the only event in the country
that
trains and empowers advocates on issues
surrounding Parkinson's disease. For the past
six years, Parkinson's advocates from across
the country have gathered in Washington,
D.C. to hear the latest developments in
Parkinson's research and advance their
knowledge of public policy.
If you are interested in attending Forum 2000, please call the Network at
800-850-4726 and we will send you the Forum registration information as soon as
it is
available
Registration packets and more information about the Parkinson's Action Network
Seventh
Annual Public Policy Forum will be available soon. We want you to be there with
us! There
are many opportunities for Parkinson's advocates to learn, be inspired, visit
with their
representatives in Congress to let them know what we need to secure a better
future for
those affected with Parkinson's disease. Help us move the issue of Parkinson's
disease from
your communities into the halls of Congress. See you in June!.
--
Charlotte A. Mancuso
***************************************************
For advocacy, medical, and other PD-related material, go to:
http://www.onelist.com/subscribe/CurePD-NorCal
