[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.”