My View of the issue of whether to form a PWP directed non profit corporation or keep it as a grass roots advocacy network is based on my experience with the Pipeline Project for 6.5 years. I think the PPP is the only organized independent advocacy voice for PWP, so as I have indicated in my previous posts on this thread, we can learn from the PPP experience and even build on its demonstrable accomplishments with an new organization, Global Coalition of PWP for Hope (or whatever it turns out to be).

PPP has a mission and plan, but little of the other organizational structure necessary to make us more efficient and effective. We are fortunate to have Henry E., a former association executive and an attorney, who is helping us create a decision making structure, which will be necessary in any scenario, if the pipeline project wants to continue to play an independent role. Our considerations could be valuable in the formation of a PWP organization in which PPP played a role consistent with our existing focus on the voice of the patient.

I have no aspirations to be the God Father of the proposed organization or to leave horse heads lying around, as Tom had joked. As I have been able to attract resources and support from outside the PD community to do the things I still do well (strategic planning and program development), my interest in managing Pipeline or any other efforts has been reduced so I am glad that others have stepped up to make important contributions.

My interest is in unity (as Carey documented 5 years on her video for me) and Ubunto (African term for team work), as I have communicated to some. To put it in a biblical context, it is necessary for PWP to overcome the challenges of the Tower of Babel, to reach for the cures. I had been hoping that the PD organizations would do this, but now I realize that we have to do it ourselves, and lead the organizations to the 'promise land' (back me up on this Sister Jaye).

Discovery that frustration with the role of PWP with respect PD orgs is widespread, not just my own experience, gives me hope that I am not out of step with the PD community, and that what I have offered freely to the PD cause may be viewed as an asset rather than a threat gives me hope as a group we can take more control of our destiny from those who make poor choices on our behalf.

I see the PWP organization as a potential vehicle for a number of PWP motivated efforts and an effective tool to assert our collective aspirations. This is a mission bigger than each of us, so to me it warrants setting aside ego and bringing the assets that each of us have to the table to make it work. This means putting aside past differences and making a critical assessment of what each of us can do. Then deploy the combined talents in an organized way to plan our programs.

I would like to suggest that a group be designated to initiate the advocacy data base as a process of organizing the network of PWP advocates. First an organizing committee will be appointed I do not know how to select a leadership group for the organizing tasks; The only feasible way to do it is to just start with the motivated people self selected in this thread to constitute the organizing committee and after the organization is set up to have bylaws that determine a process that is satisfactory to all (e.g elect board members, rotate board members, etc.)

This organizing group may include Carey, Peggy, Paula, Anne, Jean, Sheryl, Tom, Rick, me or others to canvass the people who have shown an interest in this thread and others to identify all the Patients/caregivers that we know as an initial member list. The list would include past leaders, such as Bernie B, Jim Cordy, and Joan Samuelson to see if they can participate in any way. This list will be expanded by asking each of the people to name others they know not on the list, who we could contact sign up for the initial data base. Everyone who signs up becomes a member. We will need to add questions to the advocacy data base on the skills and resources that each person brings to the unified organization (a checklist with categories given). With several hundred of the most active people in the pd on the list we will be in a good position to assert legitimacy as a voice for patients. Then with widespread publicity we can put links on websites and continue to canvass for more names and ultimately include all PWP advocates.

REACTIONS?

Perry