Announcing the Establishment of the NPF Parkinson Patient Congress
The National Parkinson Foundation, recognizes the contribution of the
grassroots Parkinson's community in passing the Udall Bill, and believes
this previously untapped resource should have a greater voice in
establishing a national Parkinson's agenda. Therefore, it is with pleasure
that I announce, the establishment of the "NPF Parkinson Patient Congress".
NPF believes having involvement in setting the
agenda for Parkinson's disease will further increase grass roots
commitment. NPF hopes that by providing a vehicle for PWP's to give their
input will further empower the grassroots resource.
NPF's Parkinson's Patients Congress will consist of a committee of leading
grassroots advocates and these
representatives shall meet annually in Washington, DC. This annual
meeting will be open to anyone with a Parkinson's connection regardless
of affiliation. The intent is for PWP (people with Parkinson's) to
participate as individuals not representatives of any specific
Parkinson's organization. This Congress will answer the question "Who
speaks for the Parkinson's community". Anyone who has Parkinson's disease
or those with loved ones with Parkinson's disease are encouraged to
participate.
In addition to establishing a national agenda by PWP this group will
elect a leadership committee to represent their interests. The Committee
will have as its principal functions representing the congress and the
distillation of input from the Parkinson's community into an agenda for
the annual meeting. These "positions" for advocacy will form the NPF
Patient Congress public policy agenda. These issues may form the basis of
federal legislation and regulation. NPF and the Congress will solicit the
assistance of other Parkinson's organizations when appropriate.
The Congress will be administered from Washington, DC, out of the NPF
Washington Office under the direction of Larry Hoffheimer and Bill
Turenne.
In preparation for the initial meeting of the Congress the initial
Leadership Committee has been organized which Jim Cordy has agreed to
chair. This committee will meet in early January. Joining Jim are:
Carol Walton, Lupe McCann, Bob Dolezal, Bob Martone, Charlie Richards,
Dale Severence, Margaret Tuchman, Perry Cohen, Peter Morabito, Dave
Engels and Terri Whitling.
NPF is committed to leaving no stone unturned in the quest for a cure for
Parkinson's disease. The NPF administration of this Congress may provide
the opportunity for a unique synergy between the Congress and the nearly
50 NPF Parkinson's Centers of Excellence. NPF's goal is to provide
effective leadership to the Parkinson's community wherever it is needed
and welcomes you to join with them in finding a cure for Parkinson's
disease. This must be first and foremost on everyone's agenda.
Keep abreast of developments at NPF by subscribing to our outstanding
newsletter, The Parkinson's Report, which is disseminated to nearly
200,000 persons and/or visiting NPF's Homepage at
http://www.parkinson.org.
The initial Congress meeting will be in Washington in the Spring of 1998.
Some financial assistance will be available for travel expenses. If you
are interested in participating in this bold new initiative, either by
attending the Congress or suggesting issues you feel the need to be
addressed, please contact the NPF Washington Office by phone, in writing,
or by email.
National Parkinson Foundation, Inc.
Washington Office
1250 24th Street, NW, Suite 300
Washington, DC 20037
(888) 331-4NPF
email: [log in to unmask]
[log in to unmask]
