List Friends,
FINALLY!!! The ink has dried, the stamps have been put on the
envelopes and the first national mailing of informational packets are
being delivered to 1,800 support groups (THANK YOU, DALE!), NPF
Centers of Excellence, NPF Chapters and about 1,000 individuals. If
you have not received this material by March 15, and are interested in
having hard copies, please check with your support group leader and
call Bill Turenne, toll free, 888-331-4673.
This is a scanned copy of one of the inserts. I hope it will give you
a basic
understanding of the PA.
WHO IS THE PARKINSON ALLIANCE?
The majority of the current Alliance Leadership Council is comprised
of grassroots advocates who played a major role in the enactment of
the Udall Act. The Parkinson Alliance membership currently has nearly
one thousand dynamic and committed volunteers from across the United
States. If you're not a member yet, we hope you will be soon.
THE EXECUTIVE COMMITTEE includes Jim Cordy of Pennsylvania, Dr. Peter
Morabito of Washington, DC, Charlie Richards of Massachusetts, Dale
Severance of New York, Margaret Tuchman of New Jersey and Carol Walton
of California.
THE LEADERSHIP COUNCIL (in formation) currently includes Gerry Haines
of
Pennsylvania, Vernice Roberts of New York, Saul Siegel of Ohio, Jacque
Urso of Florida, Jim Warsaw of California, Terrie Whitling of New
Jersey, Mary Yost of California and Gayle Zoeller of Kentucky.
WHAT IS THE PARKINSON ALLIANCE?
We are the only national volunteer group composed of people with
Parkinson's disease or directly affected by it. We are dedicated and
proven Parkinson's advocates who aren't willing to sit around and wait
for a cure to be found. We encourage everyone with PD or directly
affected by PD to join us with the common goal of caring for people
who have Parkinson's disease today while working for the cure so there
will be no Parkinson's tomorrow.
We are not "yet another national organization," we are the volunteer
grassroots fundraising and advocacy arm of the National Parkinson
Foundation (NPF). We believe that our affiliation with NPF brings
together the enthusiasm, passion and urgency of people with
Parkinson's disease and their loved ones with the international
research resources, knowledge and administrative support of NPF.
WHY DOES THE PARKINSON ALLIANCE EXIST?
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 who,
to that end, develop and maintain a national policy agenda with and
for the Parkinson's community. Through state-of the-art communication
at the grass roots level, we advance the national policy agenda and
empower people affected by Parkinson's disease to make a difference.
As the grass roots advocacy and fundraising arm of the NPF, we welcome
the participation of all people directly affected by Parkinson's
disease. This affiliation combines the structure and organization of
NPF with the sense of urgency and enthusiasm of the grass roots
advocates in the shared goal of finding the cure for Parkinson's
disease.
OTHER FREQUENTLY ASKED QUESTIONS
HOW DOES THE PARKINSON ALLIANCE PLAN TO FULFILL ITS GOALS? Initially,
by raising funds for innovative, new research and by empowering people
who have Parkinson's disease. We will seek the ideas, involvement and
participation of People with Parkinson's (PWP) from all over the
country. This is our strength. This is what makes us unique. This is
our power. And, it's your power too.
WHAT RESEARCH DOES THE ALLIANCE PLAN TO SUPPORT? The Alliance will
focus first on raising money for a new program called PRO-Seed Grants.
WHAT IS THE PRO-SEED GRANT PROGRAM? PRO stands for Parkinson Research
Opportunity. The PRO-Seed Grant Program has been created to encourage
the submission of more high-quality Parkinson's disease research
proposals to the National Institutes of Health (NIH) by providing
initial funds to "new" investigators - innovative young researchers or
proven investigators from other sciences who are interested in the
field of Parkinson's disease. Grants will be made on the basis of
scientific merit, as determined by the National Parkinson Foundation's
prestigious Scientific Advisory Board's peer review process. Typical
grants will be approximately $25,000. Our goal is for the Parkinson
community to fund 100 additional high-quality PRO-Seed grants, for
later submission the NIH, for each of the next two years. This,
combined with an
unprecedented $2 billion increase in NIH appropriations should ensure
that we obtain at least the $100 million in focused Parkinson's
disease research authorized by the Udall Act.
DOES THE NIH ENDORSE THE PRO-SEED GRANT PROGRAM? Wholeheartedly! Dr.
Gerald Fischbach, the new Director of the National Institute of
Neurological Disorders and Stroke (NINDS), where the lion's share of
Parkinson's disease research is conducted, is enthusiastic about both
the PRO-Seed Grant Program and the Parkinson Affiance itself. Also,
the Experimental Therapeutics Branch of NINDS was recently designated
a National Parkinson Foundation Center of Excellence and works closely
with the Foundation.
DOES THE PARKINSON ALLIANCE HAVE A LEGISLATIVE AGENDA? We believe that
obtaining increased federal funding for Parkinson's disease research
is a three phase process: Congressional authorization (The Udall Act),
appropriation (The $2 billion NIH increase), and finally, increasing
the quantity and quality of focused Parkinson's disease research
grants funded by NIH. We are now shifting our principal focus from a
legislative agenda to grassroots fundraising in order to impact the
final phase.
However, the Parkinson Alliance will continue to monitor the
legislative arena and encourage our members to participate as actively
appropriate.
HOW WILL THE PARKINSON ALLIANCE COMMUNICATE? We believe that the
effective communication with the Parkinson's community will be the key
to our success. For the immediate future, the National Parkinson
Foundation's quarterly newsletter, the Parkinson Report, will have an
insert to distribute free standing newsletters to the Alliance
membership. For more timely communication, we will host a website,
www.parkinsonaffiance.org, which will include a dedicated listserv for
Affiance members across the country to exchange ideas instantly. In
addition, the Leadership Council will meet in person to coordinate
regional and national efforts as necessary. Communication is of the
utmost importance to us all.
CAN YOU BE A MEMBER OF A NON-NPF CHAPTER OR SUPPORT GROUP AND STILL
PARTICIPATE IN THE EFFORTS OF THE PARKINSON ALLIANCE? Yes. The
Parkinson
Alliance welcomes the participation of anyone who shares our goals.
This is not however, an effort to recruit active members of, or groups
affiliated with, other national or local organizations to raise funds
for NPF. Rather, it is an effort to get every member of the
Parkinson's community to raise funds for research at the grassroots
level. In fact, we encourage other organizations to have seed money
programs of their own. Please do what makes sense for you. Our
overriding goal is simply to fund the best research and to find the
cure for Parkinson's disease.
HOW DO I JOIN THE PARKINSON ALLIANCE?
Simply contact us! If you have access to the world wide web, visit our
website. If you get NPF's Parkinson Report, you may have seen our
recent announcements on the formation and activities of the Alliance.
There has been and will continue to be, a removable membership slip
that can you can fill out (completely please) and mail to us. (If you
have already done this, another form is not necessary).
Finally, you may use our toll-free phone number, 888-331-4673, to call
during business hours, Monday-Friday. Ask to speak to Bill Turenne. We
look forward to hearing from and working with you.
Margaret Tuchman
Princeton, NJ
H (609) 921-1696
Fx(609) 921-1613
The Parkinson Alliance
We take responsibility for OUR future!
