I couldn't have read a more encouraging, upbeat post on the morn of Dec.
18, 1999. I feel like I have received an early Christmas present and the
promise of more in the next five years. Thanks to Margaret Tuchman for
posting this news and to Jim Cordy, Pres of PAN and the other officers,
director, staff and volunteers who make things happen in this battle to
find the cure/cause of Parkinson's.
Jeanette Fuhr 49/47/44?
----------
From: Margaret Tuchman <[log in to unmask]>
To: [log in to unmask]
Subject: NONPD: LONG / NEWS / PARKINSON ALLIANCE FUND RAISING REPORT /Cure
Parkinson's Disease by 2005
Date: Saturday, December 18, 1999 1:50 AM
Dear List Friends:
We would like to bring you up-to-date about the recent happenings in
the Parkinson Alliance.
For those who may not know The Alliance, a short introduction:
At our launching, almost three years ago, we identified three
objectives:
1. Empower People with Parkinson’s (PWP’s)
2. Allow people with Parkinson’s input into a national agenda
3. Encourage coordination and cooperation among all Parkinson’s
organizations
To accomplish these, we were going to be a ‘Congress’ holding annual
meetings where all PWP’s could congregate, discuss issues (a national
agenda) and elect leaders. Never was the Alliance intended to be
separate organization. The initial group included many of those who
played a key role in passing the Udall Bill.
After the passage of the Udall bill, we realized that our mission
needed to be redefined. Upon learning that the NIH would fund ALL
grant applications that would have a ”SIGNIFICANT IMPACT”(NIH
terminology) on finding a cure for Parkinson’s disease, our role
became clear: we would change the promise to certainty that the $100
million authorized would actually be spent on Parkinson’s focused
research. We found that we could translate advocacy skills into fund
raising skills.
The Alliance’s next challenge became: how to ensure that the BEST
research scientists were are given the opportunity to do the BEST
Parkinson’s disease research?
We believe that the Parkinson Research Opportunity (PRO) Seed Grant
Program provides the mechanism to attain this goal. Our program
represents a unique private/public partnership. Relatively small
grants of $25 – $50 thousand are awarded based upon the
recommendations of select scientific peer review boards. The intent
is to considerably increase the quantity of NIH funded grants by
providing the researchers the necessary funds to gather pilot data;
properly complete and submit grant applications to the NIH.
In partnership with APDA, NPF and PDF, the Alliance was instrumental
in raising $1.4 million dollars for PRO Seed grants, awarding 48 seed
grants during 1998 and 1999. Please contact us for a list of the
grants.
For the year 2000, the Alliance, partnering with national
organizations, is planning to provide an additional 2 million dollars
for the PRO Seed Grant Program. To reach our goal of raising $2
million dollars for the next period, we are applying 4 successful
business principles:
· -----Leveraging – the basic principle of seed grants
· -----Return on Investment – getting the biggest “bang for our buck"
· -----Accountability – continual progress reports on all grants
· -----Planning – how does it all fit together?
The value of The Parkinson Alliance’s usage of leveraging to increase
the amount of monies available for research and using the vehicle of
PRO Seed grants is echoed by Dr. Gerald Fischbach, Director of NINDS.
In an interview published in the Fall 1999 Parkinson Report,(pp 2,3
and 29),his approval and promotion of these tactics are not empty
platitudes.
Raising funds for seed grant/pilot study programs is,
“one of the most effective ways to attract
investigators to the field. One of the major
obstacles for a new investigator or an
experienced investigator to entering a new field is the need for
preliminary data. Funding from private sources often allows
preliminary experiments to be performed and LEVERAGED (caps are mine)
into larger NIH funds”(p. 29)
The Alliance raises funds through:
· CASH DONATIONS from individuals, groups, businesses, corporations
and foundations, AND
· Helping to stage EVENTS
Our second most important asset is THE PARKINSON ALLIANCE CHALLENGE:
-----We are proud to announce our MATCHING FUNDS PROGRAM.
-----All donations to the Alliance will be matched dollar
-----for dollar by the Tuchman Foundation.
-----Therefore, if you donate $500, $1000 will go directly
and of course, your donation is tax deductible to the extent that the
law allows.
In the last quarter of 1999, a golf tournament and a “5-K RUN” raised
over $200,000 for The Parkinson Alliance. These were first time ever,
events and were so successful that they will now be conducted on an
annual basis.
We are also currently working on some terrific events across the
country:
Kentucky Derby Party – A black tie event, this will be held on the eve
of the Kentucky Derby. The mission of the Gala is to raise awareness
of Parkinson’s and provide an avenue for those desiring to financially
support Parkinson’s research programs. There will be famous food from
Kentucky, wonderful music, entertainment and surprise guests. This
will be another first for raising awareness of Parkinson’s during the
Kentucky Derby.
Los Angeles Marathon – will be held March 5, 2000 and will be the
first time Parkinson’s will be one of the charities in this annual
event. The Parkinson’s Unity Walk in association with The Parkinson
Alliance will be working hard on the West Coast to make this a great
success.
Bachelor Auction – The first annual—to be held in Princeton, NJ on
February 11, 2000. Tuxedo-clad bachelors will be auctioned with
monies raised going to the PRO Seed Grant Program. There will also be
a silent auction.
For more information about these events, or how you might plan an
event suitable for your community, and information about making a
donation to take advantage of our matching funds program, please
contact us.
The Alliance has relocated from Washington, DC to Princeton, NJ. Our
new address is:
The Parkinson Alliance
211 College Road East
Princeton, NJ 08540
Phone: 609-688-0870 Fax: 609-688-0875
E-mail: [log in to unmask]
Web page: http://www.parkinsonalliance.net (under
construction)
We now have an Executive Director: Carol Walton, who has moved from
California to accept this position. In her new role, Carol will be
responsible for coordinating fund raising events around the country.
Proceeds from these events will go towards funding Parkinson Research
Opportunity (PRO) Seed grants.
During 1998 and 1999, The Parkinson Alliance was instrumental in
raising $1.4 million dollars for PRO Seed grants, awarding 48 seed
grants - please contact us for a list of the 48 seed grants. For the
year 2000, the Alliance, partnering with the national organizations,
is planning to provide an additional 2 million dollars for the PRO
Seed Grant Program.
In the last quarter of 1999, a golf tournament and a “5-K RUN” raised
over $200,000 for The Parkinson Alliance. These were first time ever,
events and were so successful that they will now be conducted on an
annual basis.
We are also currently working on some terrific events across the
country:
Kentucky Derby Party – A black tie event, this will be held on the eve
of the Kentucky Derby. The mission of the Gala is to raise awareness
of Parkinson’s and provide an avenue for those desiring to financially
support Parkinson’s research programs. There will be famous food from
Kentucky, wonderful music, entertainment and surprise guests. This
will be another first for raising awareness of Parkinson’s during the
Kentucky Derby.
Los Angeles Marathon – will be held March 5, 2000 and will be the
first time Parkinson’s will be one of the charities in this annual
event. The Parkinson’s Unity Walk in association with The Parkinson
Alliance will be working hard on the West Coast to make this a great
success.
Bachelor Auction – The first annual—to be held in Princeton, NJ on
February 11, 2000. Tuxedo-clad bachelors will be auctioned with
monies raised going to the PRO Seed Grant Program. There will also be
a silent auction.
For more information about these events, or how you might plan an
event suitable for your community, and information about making a
donation to take advantage of our matching funds program, please
contact us. The Parkinson Alliance, Inc. is a non-profit organization.
WE ALL WISH YOU SPECIAL HOLIDAYS!
Carol Walton, Executive Director
Jim Cordy, President
Dale Severance and Margaret Tuchman, Executive Vice Presidents, AND
ALL the hardworking PWPs and volunteers, who are our FIRST most
important assets.
May this quote from DR. Gerald Fischbach, the Director of the NINDS be
the herald of our imminent cure:
"I concur that we are close to solving, and I mean
the word 'solving', Parkinson's disease. I hesitate
to put an actual year number on it. I think with
all the intensive effort, with a little bit of
skill and luck, five-to-ten years is not unrealistic.
We will do everything possible to reduce that below five years. I
wouldn't rule that out." Senate Appropriations Subcommittee Hearing,
September 28, 1999.
