[SherylJ]

[QUOTE=aj04;348621]

People with Parkinson’s Global Coalition

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


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 by building a global network for awareness, advocacy, and action. We claim the right, the authority and the duty to represent our own interests.


AJ, outstanding job on this. My only issue relates to the name.
I think it is important to stress the breadth of the coalition -- that it "comprises patients, families and friends around the world." By using the name PWP Global Coalition, we lose this edge.

sheryl

[lindylanka]

This is looking so good that I do not wish to throw any cold water on it, but there is one word that I question if this is to be a truly global affair. The word 'creed' is of great significance to christians all over the world, but may not be appropriate for what is likely to become an organisation that crosses all borders. I suggest that 'philosophy' might be a better term, but that is just my take on things. Sometimes small things can create barriers and I think this is all about taking them down.... perhaps there are other words that might be even more suitable...

Lindy

[aj04]

Thank you all for your comments. Yes, Jaye, I would put a comma before "no matter how small" in what was the "creed." Lindylanka, I had to laugh (which I hope offends no one) but I never use that word, "creed," generally because I studied religion in a previous life too and was always fascinated by the Christian creeds--literarily and conceptually, but not, since the time I was much younger, with any kind of belief. The creeds spoke of a belief system. I didn't know they carried a Christian connotation or association. Hmm. interesting. I have absolutely no problem with using some other word. I am merely interested in your reaction, on the behalf of others, that shows a cultural sensitivity I lacked. And my reaction to that. Thank you.

To me, this isn't so much a philosophy. It is, perhaps a philosophical statement, but it isn't really a developed philosophy, is it? Could we introduce it more literally and just use Our Hope?

Sheryl, I don't understand your reading of Global Coalition and comprises patients, friends and family around the world. Doesn't the latter simply fill in details of the former? Where is the edge lost?

Got to run, but will be back later this afternoon. I hope I haven't misspoken in my haste. Oh, and there should be another comma but no time explain--just a detail.

Thanks again.
AJ

[Perryc]

Originally Posted by jeanb

Perry,

I have no idea of the benefits of incorporating. You say that the Pipeline has talked about incorporating (but I think they have not done so)

Can you share with us the pros and cons of taking this route?

thanks jean

Jean:

Basically, an incorporated organization is a recognized legal entity, with a mission, a governing board, bylaws to specify decision-making, and if granted by the IRS, able to receive tax deductable contributions (501C3). An important value of incorporating is the corporate shield provided to the individual participants against legal proceedings. The cons are the start-up costs, and on-going reporting, limits on activities, and other administrative costs, particularly if we become Tax exempt.

You are welcome to participate in these discussions, to learn more. Maybe our attorney friends (Greg?) would like to confirm and add to this answer.

Perry

PS: I forgot to mention one of the most important values. If you are not incorporated many government agencies will not recognize you as a having a legitimate role to attend a meeting. I often have to find one of the PD orgs sponsor me to get an invitation. If we are a unified voice of PWP, they couldnt leave us out as often happens now

[Todd]

It is exciting to see everyone so fired up, but to be honest, I am concerned of the direction this is headed.

There is much talk about "giving the researchers what they need" and "clinical trials" etc. To me personally, this is what the PPP exists for. We don't need another group overlapping what's already being done.

My initial thought was to get the PD community fired up to start putting extreme pressure on the PD organizations to get their act together and create a unified marketing campaign to bring much needed awareness of our disease to the general population. Like Stand Up To Cancer, like breast cancer awareness, etc. Where is our voice in this?

That is the direction I originally intended and one that I will continue to pursue.

Where you all take this thread will certainly benefit the PD community in the long run, but it's not the mission I suggested or signed on for. I'm all for thinking big and out of the box, but we must learn to walk before we can run.

Fight the good fight.

[indigogo]

Originally Posted by Todd

It is exciting to see everyone so fired up, but to be honest, I am concerned of the direction this is headed.

There is much talk about "giving the researchers what they need" and "clinical trials" etc. To me personally, this is what the PPP exists for. We don't need another group overlapping what's already being done.

My initial thought was to get the PD community fired up to start putting extreme pressure on the PD organizations to get their act together and create a unified marketing campaign to bring much needed awareness of our disease to the general population. Like Stand Up To Cancer, like breast cancer awareness, etc. Where is our voice in this?

That is the direction I originally intended and one that I will continue to pursue.

Where you all take this thread will certainly benefit the PD community in the long run, but it's not the mission I suggested or signed on for. I'm all for thinking big and out of the box, but we must learn to walk before we can run.

Fight the good fight.

Todd - I wish you'd take another, closer, more careful look at was is going on here. The effort to create a scientific database for research is being pursued on a separate track and there has been very little talk about clinical trials. What we are attempting to do is create a united patient voice for advocacy. How can patients be expected to "pressure" or influence anything or anyone unless we can show a unified front?

Is pressuring the organizations to unify on anything really the most effective use of our time, or is it finally finding our own, unified voice and using it to promote PD awareness on a global scale? Personally, I'd rather see the orgs have a united research front before promoting a united awareness campaign; the orgs have the power of fundraising for research in their hands - I wish their scientific boards and research budgets were unified.

The patients are taking the lead on unification. We can lead by example; flex our voice and our power (getting "fired up"), and do constructive things for PD. If we do it right, the orgs will follow. And we have a better chance of promoting awareness than we do in influencing research at first - the research will come if we get the scientific database right.


AJ & Sheryl - I think Sheryl meant that using just "Parkinson's" rather than "People with Parkinson's" in the title indicates a broader coalition. What does everyone think?

AJ - I think your edits are great. I like the sensitivity to the other orgs.

People with Parkinson's Global Coalition or Parkinson's Global Coalition

AJ once proposed "United Parkinsonians" in a conversation we had. I like the acronym "UP" - very positive! Or how about "United for Parkinson's"?

Lindylanka, AJ, et al: we could use the original Latin, "credo" or, as Webster's defines it "our guiding principle."

[Perryc]

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

[indigogo]

Perry -

Bravo!

I've been looking for that video I made; I have it somewhere, and when I find it I will post it.

I like your organizing idea:

"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."

I would rather not do any recruiting, though, until we have the mission statement and name nailed down, and the database set up. It has to be real before we ask more to join.

Keep the faith -

[SherylJ]

[QUOTE=indigogo;349008]Todd
AJ & Sheryl - I think Sheryl meant that using just "Parkinson's" rather than "People with Parkinson's" in the title indicates a broader coalition. What does everyone think?

Thank you, Carey, that is exactly what I meant. I would hate for potential supporters to see our group name and feel like they would not be welcome.

sheryl

[paula_w]

I second that bravo Perry. This thread "is what it is". If it's marketing that is your choice and preference Todd, then go for it. In trying to unite the orgs, I wish you Godspeed. But the birth of this movement, altho might have roots in the work of the PPP, is definitely not a duplicate org. PPP is supported by PDF and it looks as if we are going to be even more closely affiliated with them in the future.

In fact, and I say this with a smile. Perry has been trying to get people interested in electronic medical records for years. He has slipped it into pipeline documents rather sneakily, and we have asked him to take it out - not yet ready to take anything like that on. He has tried to interest some orgs in EHR, with no luck. Thus. Perry individually, knows a lot about it. But it has never been on the pipeline agenda. As a charter pipeliner, my interest was finally sparked by the connection made between John's offer here at neurotalk. and Perry for the hundredth time talking about the need for data collecting.

PLM is the patient driven leader here, with non-patient companies now springing up like 23 and me also. This data collection database has a way to go, with the email database going first ASAP, based on what I understand so far.

Perhaps we have different thoughts about outcome, but as an advanced patient, I am focused on one thing - a treatment. This is a hands on chance at finding one - maybe even accidentally, without long drawn out clinical trials.

The organization was born here at Neurotalk, and includes pipeliner experience, but will not be led by them.

I wish you luck in putting pressure on the orgs. I think we have moved beyond them and are going completely independent and global. This is born out of this forum and an administrator involved in e-patients. It has global interest.

Key word = independent.

sincerely.
paula