[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.

[TommyI]

Lindylanka. I would very much like to speak to you. I am not saying that we (as the rest of the world) split from the US - quite the contrary. The database needs to be global - that was the original concept. Nor was I saying that there are no advocates anywhere else but the US - I was merely saying there was greater depth on this forum of Americans which made their decision making process more difficult than ours.
I hope we can speak so that I can arrest your fears here - back me up here guys! I would also like to enlist your help.
I am already planning the Rest of the World Database (which clearly needs to be established and run outside the US and then linked back in). SuffolkChris has agreed to be involved and I am looking for independent funding. I will also be asking the EPDA Board, of which I am part if I can approach all the European PD organisations for their support to advertise this initiative.
If you think about it all PD orgs should support this venture. It is absolutely in line with current best practice and if we get it right with the Mission Statement (good idea) and we ensure that the whole thing is organised and delivered with structure and credibility - then really everyone should support us in this venture.
The best way to motivate patients is through other patients
The most powerful voice in health is that of the patients
The way to increase the profile of any conditiion is through the patients.

We are not a threat to patient organisations with this database - we are potentially a huge asset. BUT we have to get it right.

Carey - can we speak too. I would like to talk through the WPC piece with you.

Tom

[aj04]

This discussion is sounding wonderfully creative, conscientious, and just downright smart. I think individual's talents and hard-won insights born out of their experiences both within and without the PD community will continue to inform both the process and the results. That is to say, "Bravo."

But, pf course, I have some specific comments to make.

Carey wrote:
People with Parkinson’s Global Coalition for Hope

(Of course, those of you who have known me for a long time know that I have some things to say about hope--but they don't belong here. Read, or re-read, Tom's words on hope reprinted below.)


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

Do we have to make this claim? One voice is not necessarily entirely accurate, and to simply speak for people living with PD is enough.

The Coalition is comprised of This international coalition comprises Parkinson's patients, their families, and friends. Or, The Coalition comprises 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 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. Is it only through action? Are we are talking about education and understanding too?
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, thanks for the reminder that those who are working within the orgs' structures are still needed there. That representation has been hard won and is important. As are the efforts, old and new, taken by individuals who have seen a hole in the community and gone right ahead and filled iit.

[indigogo]

Originally Posted by aj04

This discussion is sounding wonderfully creative, conscientious, and just downright smart. I think individual's talents and hard-won insights born out of their experiences both within and without the PD community will continue to inform both the process and the results. That is to say, "Bravo."

But, pf course, I have some specific comments to make.

Carey wrote:
People with Parkinson’s Global Coalition for Hope

(Of course, those of you who have known me for a long time know that I have some things to say about hope--but they don't belong here. Read, or re-read, Tom's words on hope reprinted below.)


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

Do we have to make this claim? One voice is not necessarily entirely accurate, and to simply speak for people living with PD is enough.

The Coalition is comprised of This international coalition comprises Parkinson's patients, their families, and friends. Or, The Coalition comprises 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 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. Is it only through action? Are we are talking about education and understanding too?
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, thanks for the reminder that those who are working within the orgs' structures are still needed there. That representation has been hard won and is important. As are the efforts, old and new, taken by individuals who have seen a hole in the community and gone right ahead and filled iit.

AJ - thank you for taking the time to reply.

I agree with most of your suggestions. Here's the run down for me:

- I included Hope in the title because I was trying to gather all of the proposed ideas together. I think all is on the table and up for discussion. Hope is kind of squishy. I love what Tom writes about it.

- I agree; taking out "with one voice" actually makes it stronger and more truthful; we are actually speaking for several voices

- I think re-wording the first sentence is just fine.

- Regarding "Hope through action" - I think educating people and promoting understanding IS taking action. I actually originally wrote, "Hope through action, education, and awareness," but decided Hope through Action a little pithier and really encompassed all. It's all on the table.

- I agree we need to continue the work through established channels; we have experienced tremendous respect and success. I believe the "patient only" movement exists only because there are things we cannot expect the orgs to do on our behalf. We sow only discontent if we continue to complain about things that cannot be solved within the current structure. I hope that what we are doing is a positive for the PD community as a whole, something to be embraced not feared.

That said, I had to overcome my own fears in order to completely get behind this effort. Yesterday I found this quote from Susan B Anthony (the women's rights activist who worked for U.S. women's suffrage in the latter part of the 19th century, for those abroad); it gave me strength:

“Cautious, careful people, always casting about to preserve their reputation and social standing, never can bring about a reform. Those who are really in earnest must be willing to be anything or nothing in the world’s estimation, and publicly and privately, in season and out, avow their sympathy with despised and persecuted ideas and their advocates, and bear the consequences.” — Susan B. Anthony

I don't think we are "despised and persecuted," but I do think we are often not heard.

[paula_w]

I'm going to start a new thread because i want to post more. I talked about it to Carey and agree with her thinking that it should keep its name- thus see What's wrong with the PD community? part 2
paula

[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