Dear Listserv Members:
We just returned from a meeting in Washington, DC with the National
Parkinson Foundation (NPF) and want to give you a status report. In
attendance were all members of the Parkinson Alliance(PA) Executive
Committee, and from NPF Nathan Slewett, Abe Lieberman, Michael Alicia,
Larry Hoffheimer and Michelle Oliva (Administrative Assistant to Larry
Hoffheimer) as well as Martin Tuchman of The Tuchman Foundation. One
of the many subjects that were discussed was communicating with the PD
community on a regular basis and this is one of our number 1
priorities.
The PA currently has over $100,000 available for the Pro-Seed Grant
Program. PRO-Seed stands for Parkinson Research Opportunity. The
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. Typical grants range from $25,000 to $50,000. This money has
come from several sources:
1. Coins collected from containers in our Pennies for Parkinson's
Program.
2. Personal checks from individuals who want to support research and
believe in the Pro-Seed concept.
3. Events such as Health Fairs, Theater Groups donating an evening's
performance, garden parties, chinese auctions, dog walks, creating
special arrangements with businesses to donate percent of revenue to
the PA, etc….
As we are growing we are learning some important lessons. We are
recognizing that the first campaign strategy for the Alliance-Pennies
for Parkinson's containers-will take a longer time to give us the
ability to fund seed grants in an expeditious manner. From experiences
you shared with us, we recognize that both individuals and groups can
create events to help us raise funds in addition to the containers.
These events can be as simple as having a group to your home and doing
a chinese auction to the most prestigious events i.e. a Gala. Sharing
our goals with others allows people to be very creative. For example,
a small theater group will be donating one night of proceeds to the PA
for each of their productions. It is clear that many different
opportunities exist in each community that is unique to the area.
Currently we are working on an information/member package for all PA
members as well as anyone interested in becoming a member. This
package will contain templates and actual "how to's" for some of these
events. We want to make it very easy for anyone to join who wants to
help us raise money for research to find the cure. We will be
notifying you as soon as this package is available.
For those of you who may not be aware, one of our sources of revenue
is a Visa Card called The Affinity Card. The card was issued as an
NPF credit card. The PA has an agreement with NPF that this money
will be used for the Pro-Seed Grant Program. For every application
approved, $25 goes to research. In addition a percent of all
purchases on the card will go to research. For more information, or
applications, please contact Michelle in our Washington DC office at
the toll free number -888-331-4673.
For those who send checks, it is important to specify where the money
came from-i.e. Pennies containers, events, or personal contributions.
This will help in our accounting system.
In our next report to you we will be providing an update of money
raised by state. All acknowledgements of gifts will be mailed early
next week.
For those who have already raised money for research we THANK YOU.
For those who have not participated yet, we encourage you to call the
PA office and ask for information on how you can become active.
Our Washington, DC office:
Parkinson Alliance
1250 24th Street,N.W.- Suite 300
Washington, DC 20037
Toll Free Phone 888-331-4673
Fax - 202-466-0585
E-mail - [log in to unmask]
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IMPORTANT NOTE: Since we are in the Appropriations season in Congress,
please refer to Parkinson Action Network memo dated July 16 titled
"Urgent Appropriations Information".They have an excellent outline
listing representatives and telephone script that is easy to follow.
*******************************
Dale Severance
for the Parkinson Alliance Executive Committee
