This is really getting to be fun!

Thanks Perry, Tom, Peg, Paula, AJ, Rick, Jean, Leonore & Curious for your helpful and insightful comments!

Up front, I agree and disagree with Tom about the scientific database. I think it is imperative that we move forward without first trying to get a handle on that project - it is a huge, complicated undertaking and potentially expensive.

But it also is important to a large segment of the population, and should be encouraged to happen, and happen concurrently. I think our mission and goals will be written broadly enough to encompass this kind of database when it is ready for prime time.

I think the idea to investigate "23 and me" is a good one; they are connected to MJFF.

I believe our most urgent task is to collect and build a legitimate and authentic patient voice for advocacy and influence.

Perry - great stuff about identifying unmet needs and setting the agenda!

I really like all of the comments about hope and action and jazzy brains and influence and legitimacy and ecstacy and momentum and involvement and . . . !

This definitely is a work in progress - keep the suggestions and edits coming, and we'll keep refining. Here's a new take on the Mission (changes in purple):


The Alliance is comprised of Parkinson's patients, their families, and friends around the world. 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 by building a global network for advocacy, action and awareness. We claim the right and authority to represent our own interests. Our guiding precept is HOPE + ACTION = SOLUTIONS

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

Encourage patient involvement/advocacy
Provide leadership in setting the agenda for the PD community as a whole
Provide education and understanding of Parkinson’s from the Patient Point of View
Identify gaps in the programs covered by the existing organizations
Work collaboratively with existing organizations to address unmet needs and assist and inform ongoing projects
Collect and disseminate information
Canvas opinion on issues
Petition on behalf of PD patients, and
Issue Press Releases

We do this through the operation of a website that acts as a virtual headquarters for networking and information sharing and collection, and serves 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.”