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Kathleen and Dee,

The hope that the many national Parkinson's organizations would unite or
at least work cooperatively with one another has been expressed by many
pwp for many years. I don't know why there are multiple national PD
organizations, but as Dee wrote -
"... the funding for Parkinson's treatment & cure, is diluted and
weakened by being diverted to too many agencies, too many chiefs and too
many
indians. "

I think also with so many organizations and spokespeople that  the impact
of  our message is also diluted, among the general public, politicians
and government officials.

Kathleen noted:
" I for one would like to learn more about the
> various organizations, what each focuses on, and how well they are
deemed to
> be run  by the agencies who evaluate that kind of thing."

--Each organization seems to have a particular focus, and i think they
each do a good job. For example, it seems to me that NPF has a terrific,
informative web site and produce very useful patient education materials.
APDA provides much needed Information and Refferal services and support
for patient support groups. PDF focusses on traditional research funding;
the Parkinson's Alliance on seed grants, particularly for younger
researchers;  Michael J Fox Foundation on innovative and fast-track of
research funding;  PAN on political advocacy.  I have no doubt each
organization is run by dedicated, talented people who want to find the
cure for Parkinson's , but they could be more effective if they combined
all their efforts and talents into one organization. Financially, there
could be less money spent on administrative and fund raising efforts and
more funds available for research and patient care.
You can find financial information on  non -profit organizations on the
web on:
Give.org
http://www.give.org
and on GuideStar -
http://www.guidestar.org

There have been some incidences in the last few years where organizations
successfully worked together, such as contributing funding for and
evaluating NIH  research grants. PDF seems to be especially supportive of
PAN's  political efforts. There have been rumors for some time that PDF
and NPF are working on a merger, but that seems to be stalled, and there
is little information about it from the organizations themselves. I think
it would be an important first step. It seems to me that PD patients
would benefit and the efforts to find a cure would be advanced if our
organizations spoke as one voice.
Any other opinions?
Linda

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