[indigogo]

Following up on Lindylanka's suggestion to devise a "statement of intent and a proposal, or something similar to a mission statement that condenses the core aims, all the detail can then be worked on from there. It is easier to get consensus on the heart of the matter......... that would be what people would sign up for, and would identify with........"

I've come up with the following draft statement that combines words from many of the posters in this thread. PLEASE join in and edit - change - add - at will! I have no ownership of this; I really want this effort to go forward, and be successful - the only way to accomplish this is if it is owned by the entire community!
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People with Parkinson’s Global Coalition for Hope

United by incurable disease, common purpose and shared humanity to speak as one voice for people living with Parkinson’s disease.

The Coalition is comprised of Parkinson’s patients, their families, and friends. Our mission is to enhance and accelerate efforts to find new treatments and a cure, and to promote best practices for quality of life. Our goal is to unify the Parkinson’s patient community through an internet database for advocacy, action and research. We claim the right and authority to represent our own interests. Our guiding principle is HOPE THROUGH ACTION.

In order to advance our Mission and accomplish our Goals, we:

Encourage patient involvement/advocacy
Collect and disseminate information of particular importance, scientific and otherwise
Canvas opinion on issues
Petition on behalf of PD patients, and
Issue Press Releases on topics of concern to PWP

We do this through the operation of a website that collects information for several databases and acts as a platform for the promotion of patient-driven projects worldwide.

In the words of Tom I:

”Hope ignites a fire in the soul and rekindles the dying embers of ambition and purpose. When you accept there is the chance no matter how small, that you are not doomed to a life borne out of your own nightmares, then you start to gather information and you start concentrating on what you can do, rather than on what you can’t.

We are right to be hopeful and we have a duty to communicate this hope to others so that they too will engage in the quest for the acceleration of the inevitable downfall of Parkinson’s.”

[paula_w]

Lindy,

Love is a perfect word. Thank you for your post, and your writing is excellent [always thought so].

I am taking care of my father this week and he doesn't have a working computer - so that's tomorrow's project - to try to get it up and running. I needed to shut up for awhile anyway; I'm sure you may have noticed ...lol

Carey i don't know if you've heard privately from Doc John but he did say that pms with multiple addresses would work for communication - at least for starters. This project can't stop for even one day.....I haven't read your post closely yet but I will!

So many ideas my brain is ready to explode. I'm very excited about this and with so many working together we have to make an impact.

A word for those working with the orgs - you are very much needed and don't abandon your work. Orgs took some hits and deservedly so, but the pwp working with them serve a very important purpose. We are just branching out .....and it is bringing hope where it is sorely needed.

peace and love from a baby boomer - still taking too many drugs - who would have guessed? If we would have predicted that we would be an entire chemical generation , they would have told us we must have holes in our heads......
paula

[Curious]

if you end up using nt and the software here and need help, let me know.

you can send pm's up to 25 people at a time.

social groups can be set and used like a sub forum.

[Jaye]

Carey, I'd like the statement of purpose to say something about knowing that our hope is for one another as much as it is for ourselves, that we need each other to carry out any part of our vision. Maybe it's already in there; I'll try reading it again in the morning. Good draft, though.

I acclaim you as our leader at this point in the effort. Maybe you would prefer Facilitator or Task Chief or Maitre d' or something cleverer. I like your big pictures.

Carey on!

J.

[Perryc]

Originally Posted by indigogo

People with Parkinson’s Global Coalition for Hope

United by incurable disease, common purpose and shared humanity to speak as one voice for people living with Parkinson’s disease.

The Coalition is comprised of Parkinson’s patients, their families, and friends. Our mission is to enhance and accelerate efforts to find new treatments and a cure, and to promote best practices for quality of life. Our goal is to unify the Parkinson’s patient community through an internet database for advocacy, action and research. We claim the right and authority to represent our own interests. Our guiding principle is HOPE THROUGH ACTION.

In order to advance our Mission and accomplish our Goals, we:

Encourage patient involvement/advocacy
Collect and disseminate information of particular importance, scientific and otherwise
Canvas opinion on issues
Petition on behalf of PD patients, and
Issue Press Releases on topics of concern to PWP

We do this through the operation of a website that collects information for several databases and acts as a platform for the promotion of patient-driven projects worldwide.

In the words of Tom I:

”Hope ignites a fire in the soul and rekindles the dying embers of ambition and purpose. When you accept there is the chance no matter how small, that you are not doomed to a life borne out of your own nightmares, then you start to gather information and you start concentrating on what you can do, rather than on what you can’t.

We are right to be hopeful and we have a duty to communicate this hope to others so that they too will engage in the quest for the acceleration of the inevitable downfall of Parkinson’s.”

This very well stated Carey, eloquent and inspirational. And Tom’s statement puts the whole concept into a context with a spoonful of humanity with pinch of passion that I know I could have never understood before I had PD, but I am sure most do understand. It reminds me of a conversation I had with Tom a couple of years ago about so called "false hope" that PWP were being given by study doctors in the GDNF clinical trials. The power of hope is a prime basis for the uniqueness of the patient view

Very observent people recognize the patient perspective as a key asset at the table, necessary to solve this disease. Clifton Leaf, from Fortune Magazine, a cancer survivor himself comes to mind, when he quoted me with the bottom line on his thoughtful article on FDA, "Deadly Caution," saying the motto of the Pipeline Project, "The missing ingredient in the development of new therapies is the voice of the patient."


Legitimacy

As someone who has made great efforts to represent the interests of PWP in regulatory processes and with industry. I do not think it is possible to be the one voice for anything, because patients are people with different life situations and expectations. I present myself and the Pipeline project as an "authentic voice for patients." Through forums like this one and association with people like Paula, Peg, Carolyn, Greg, Ann, Linda, Ken, Sheryl, Jean, David E, as well as Tom and Carey, and many others who are active in leading opinion for those involved with PD advocacy, I try to stay tuned to the PD patient community opinion. I think we can safely say that we are authentic and well informed patients who take the Patient view only, whereas all the PD orgs. have other constituencies that influence them greatly. If other groups with PD presence want to challenge our legitimacy to speak for patients views, our response should be to work with them incorporate their views into our understanding of the patient perspectives, not squash them or blow them off. This way we maintain our legitimacy as a voice for the patient.

Real Influence
An example of the strength we have already gained is our relationship with the FDA staff in the Office of Special Health Initiatives (OSHI), who have the task of liaison with advocate groups. They rely on the PPP network to keep their hired PD patient advocates informed about PD science, clinical research, and the views of PWP in order to effectively represent patient interests. This provides some hope in itself, because it is the first nose looking under the tent that covers the black hole of FDA regulation of industry. My experience with more than a half dozen cases is that what goes on doesn’t always smell like roses, and that some light on the process will help control some of the problems by keeping a focus on patient concerns. This is at a critical time in the process of design of clinical trials when the patient voice can really make a difference, and already has in a number of instances. <We are fortunate to have 2 new FDA Consultants, PWP who are highly educated with scientific PhD's, former government regulators in their careers (one as an FDA reviewer), who have been active in the Pipeline Project and are working on behalf of PWP.>

Additional Goals
I would like to suggest other goals of this unified voice for patients to provide Leadership in setting the agenda for the PD community as a whole, which is appropriate give the success we have already demonstrated in the Pipeline Project and other patient motivated initiatives and advocacy efforts. We are not aiming at taking over roles being accomplished effectively by existing PD organizations, but we feel it is our mandate to identify gaps in the programs covered by the existing organizations and fill those gaps when the organizations fail to address our concerns.

The leadership of this new voice for patients is expected to establish by consensus rules

• a set of guidelines for PWP that evaluate and prioritize projects we as a group feel are worthwhile for patient volunteer effort,

• ethical standards and practical (such as reimbursement policies) criteria for consideration of PWP volunteers before they agree to work for an organization or make a financial contribution.

Also, if we do take initiative in program areas such as the PWP data base project which to my knowledge no one is doing adequately, that we expect that PD orgs respect this and support or at least not undermine our effectiveness.

These criteria will be helpful to increase trust and responsiveness of the PD organizations as well as industry and medical professionals to PWP needs.


Perry

[indigogo]

Perry - I reposted your post under the new thread "What's wrong with the Parkinson's community? Part 2"

To everyone: Please join in the continuing conversation on the Part 2 thread; this one was getting too long for some folks!

[Chemar]

link to part 2.........
http://neurotalk.psychcentral.com/thread52201.html