To: NPF c/o Melinda Brown, Larry Hoffheimer, Bill Turenne
Leadership Committee c/o Jim Cordy
Parkinsn List recipients
The NPF was not the first organization to notice that the
"grassroots Parkinson's community . . . should have a
greater voice in establishing a national Parkinson's agenda."
The utility of a national strategy to make Parkinson's
disease and its devastating economic and social effects
more visible, predates the introduction of the Udall
legislation. Neither NPF nor any other single national or
regional patient advocacy group is properly positioned to
assert that IT should take the lead in providing a national
vehicle for empowering advocacy by committed PWPs at the
"grassroots" level.
The myriad of issues surrounding the treatment and cure
of Parkinson's can never be adequately addressed by one
advocacy group (NPF) acting with the annual urging of
individuals "speaking for the Parkinson's community" (Patient
Congress) to create a national agenda that seeks to
influence federal congressional and administrative directions.
As an example, take the recent merger of the Parkinson's
Disease Foundation (PDF) in NYC with the Chicago United
Parkinson's Foundation (UPF). These two advocacy groups
have determined that to better address the issues of
research activities, coordination of grants, publication of
scientific and lay literature, community and professional
education, patient advocacy and physician networks, a joint
effort of combined resources and expertise was necessary.
In reality, how could a "Patient Congress" (meeting once
a year) ever grasp or understand the nuances behind each
one of the issues mentioned above? Even the elected
"Leadership Committee" composed of interested, committed,
astute patients or care givers "representing the interests" of
the Patient Congress couldn't hope to develop the medical
and political acumen or expend the time to carry a national
agenda on a daily basis.
If, on the other hand, the NPF, through its administration
of the national agenda (established by the Patient Congress
and fine-tuned ["distillation of input"] by the Leadership
Committee) under the "direction of Larry Hoffheimer and Bill
Turenne," rows the laboring oar of this ship, then it's not truly
a patient-driven, nationally visible advocacy vehicle.
I suggest an Advocacy Group National Summit to be
attended by the leaders of each and every Parkinson's Group
(local, regional, national, international) that feels it has a
stake in the treatment and cure of Parkinson's. Let Nathan
Slewett and Harold Kravitz, Dinah Tottenham and Page
Black, John Pillarella, and others sit down and develop a
truly national agenda, that requires cooperation and
coordination among all PWP groups. Let us all march to the
same drum.
Stephan Schwartz 53/7
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