Unity: A Proposed Alliance of PWP
and Organizations That Serve Them
Do with this whatever you like. Read it, copy it, delete it, edit it, add to it, change it, steal it, pass it on, or respond to it by replying to this email. It is meant to stimulate thought on how we achieve unity among organizations that are composed of, or provide services to, pwp, including: associations, web sites, message boards, chat rooms, etc.
The Problem: There are a plethora of local, state, regional, and national organizations made up of and serving pwp’s. This sometimes provides an inconsistent and fragmented response to the needs of pwp’s and a fragmented voice to a public with numerous demands for its attention. To be specific, there are two problems that have consistently interfered with the unity of the se organizations. One is the existence, or accusation, of unethical behaviors [particularly in the areas of fundraising and organizational finances] on the part of officers and board members of some organizations. Two is public criticism of officers and board members of some organizations by those of other organizations that has at times deteriorated into public battles over which side is at fault and who “started the fight.” Both of these behaviors (unethical fundraising/finances and public attacks/counterattacks) do a disservice to pwp’s these organizations intend to serve.
There is a tremendous need for organizations of pwp to at times speak with a unified voice to: address the public about needs and concerns of pwp’s; raise money to meet the life and emergency needs of pwp’s; educate pwp’s and the public about pd; advocate for legislation effecting the lives of pwp’s; provide information about all conferences, symposia, and activities of interest to pwp’s; assist pwp’s in funding their attendance at member organization activities; encourage larger organizations that are primarily oriented to funding medical research to devote a small percentage of their budgets to meeting the present emergency and living needs of pwp’s; set ethical fundraising and financial standards for member organizations; and impartially hear, mediate, and pass judgment on accusations of unethical behavior by officers and board members of member organizations. The specific areas for an alliance to function in would be decided by the alliance itself. This is simply a tentative listing of possibilities.
Calls for Unity: There have been fairly frequent calls for unity among organizations of pwp’s. A problem is that there are so many rivalries and resentments among officers and boards of various organizations that they tend to discount one another’s calls as disingenuous and self-serving. True unity necessitates a spirit of common acceptance and respect for those persons and organizations different than self. And unity necessitates equal influence and control by all members.
Proposed Solution: an alliance of organizations made up of and committed to serving persons with parkinson’s [pwp’s]. The goal of such an alliance would be to provide a united voice and influence on issues important to pwp such as those listed above [in paragraph 2] and any other other activities on which the representatives of the alliance’s member organizations can agree to join forces. Membership in the alliance would be open to all local, regional, and national organizations made up of and serving pwp’s. Each member organization would have two representatives to participate in the decision-making, governance and activities of the alliance.
The formation of the Alliance: an organizational committee, composed of two members of all organizations interested in such an alliance, would be formed. This committee would, in an organizational meeting [lasting perhaps 5 days], create the name of the alliance, set out it’s purposes, the requirements for membership in the alliance, a code of conduct to which all member organizations would agree before being admitted to the organization, the structure of the organization, and the bylaws specifying the governance of the alliance would be decided by the committee. It is suggested that the chairmanship of this committee, as well as the chair of the alliance itself, be rotated on a fairly frequent schedule among the member organizations. The specifics would then be submitted by the representatives to their own boards for ratification. The Alliance would be made up of those organizations that vote for ratification and agree to abide by the Alliance’s code of ethics.
The continued functioning of the alliance:each joining organization would select two representatives to the alliance, who would attend and vote on, after consulting with their own organizations, all proposals. The officers of the alliance would be rotated at frequent intervals to insure balanced power and control.