[SherylJ]

Many motivating statements and ideas. Just a couple of thoughts...

BELIEF + ACTION = SOLUTIONS

While the imagery of hope is nice, sounds a little like luck... sitting around hoping someone else will do something.

I like belief... sounds stronger... committed and action-oriented... if you believe something, you can make it happen.

Results can be positive or negative while solutions has a positive connotation


Should you ever want to use BELIEF + ACTION = SOLUTIONS
as a stand alone graphic, it has to include Parkinson's or PD.

Parkinson’s Global Action Alliance
Promoting Advocacy, Action, and Awareness

sheryl

[indigogo]

Thank you so much for "solutions"!!! I was having a tough time with "results" and that is so much better!

Hope is a loaded word for many; there's a real divide between people who find it inspiring and those who feel it is empty sentiment - that's why I married it to "action."

I'd rather not abandon it yet, although I understand the argument for "belief"

What did you mean about:
Should you ever want to use BELIEF + ACTION = SOLUTIONS
as a stand alone graphic, it has to include Parkinson's or PD.

do you mean to make it identifiable as a slogan?

[SherylJ]

Carey, I understand what you're saying about HOPE. What makes this process difficult is that the same word triggers very different reactions from different people in the same target audience.

Carey Quote What did you mean about:
Should you ever want to use BELIEF + ACTION = SOLUTIONS
as a stand alone graphic, it has to include Parkinson's or PD.
do you mean to make it identifiable as a slogan?[/QUOTE]

Yes a slogan or another logo

sheryl

[Perryc]

Originally Posted by TommyI

.
Far be it from me to put a dampener on the more medically orientated database - but I am of the opinion that we are trying to run before we can walk. I think it is a cracking (good) con - they are a genetic testing group who have patients at the heart of their ecept but I worry about our ability to create a statistically significant database without serious financial and human resource behind it - not to speak of expertise.
It might be worth getting in touch with a company called "23 and me" whom I have been introduced to and aree based in the US. Check out their website at 23andme.com. (can't do links yet - not old enough!) I have spoken to them and they are refreshing and pioneering in their approach.
I don't know whether they would be interested in getting involved in a patient database, but it is right up their street and I am sure I can make an introduction if one of you wants to talk to them.
Also I have access to our own Research Director - Dr Richard Wyse who has set up significant patient databases in the past and I am happy to ask him to assist in any way you wish.

As for the other database, I agree all Greg and Carey's comments on the Mission Statement except that I think that either the science database stands alone with a significant sponsor and we run the databse for all the other issues in the Mission statement as a stand alone project which will proceed at a much faster pace OR that we proceed with a non-scientific database to begin with which then may become more scientifically focussed given time. My view is that we must at all costs ensure quantity of data NOT quality in the first instance because without quantity we have very little to work with. If we ask for people's inside leg measurement from the outset I do not believe we will succeed in this venture.
Sorry - but that's my view.
Aside from this issue - I am excited about working with you all on this.

Tom

Tom, I agree with your assessment of the patient characteristics (scientific) data base. It is a bigger effort requiring a range of expertise and input from patients and scientists (even DNA samples eventually, but I personally do not now see $999 worth of value to be found in my DNA). I think I wrote a few days ago that I see this as a separate project. I am suggesting that the kind of patient voice we want to establish would provide the kind of trusted location (patient organization) necessary to organize and publicize the database sufficiently to make it successful. Even if we didnt create these tools ourselves, if we succeed in establishing a unified voice for PWP, anyone who wanted to establish such a data base would benefit by collaborating with us.

Data about ourselves are the most unique contribution that we can make to science. <I already gave my brain to Johns Hopkins.> In the 'patient centered' paradigm, we not only participate in clinical trials but actively solicit information about the PWP population (an area where PD is particularly weak compared with most other diseases). We collaborate with science to incorporate our experience with the disease into their thinking, even if it is difficult to measure.

My recommendation to the group is to let the scientific data base idea perk for a while, ie discuss the elements important to the success of such a data base, and the resources and skills needed to launch such a project. I have a couple of initiatives in the works that could provide significant resources to do it right, and hopefully they will firm up and become a reality in the next couple of months. A patient run organization could be a nice home for these projects. Likewise, these projects could jump start the "Action" of the PWP organization.

As I have said earlier in this discussion. The advocacy data base has great appeal in its technical simplicity, and has instant payoff in power and influence of the holder of the data, just by the numbers. With 1000 names of advocates on a data base we will then be invited to meetings, closed to us before.

While technically simple establishing a lasting unified voice for PWP is organizationally quite challenging as has been noted from time to time in this discussion. I am quite pleased with the tone and outcomes of the discussion so far. Unity has always been an important theme for me. About 5 years ago, Carey documented this succinctly and artistically in a 2 minute introduction of me for a presentation (Carey is the CMU video still online?)

I want to put a key issue on the table which hasnt been discussed much. Will this unified group become incorporated? This is a topic that has been discussed in the Pipeline Project for some time now. Without going into detail I only want to say that for this effort to deliver the results expected a new patient directed organization is probably necessary. It can become a home for other wayward PWP groups, and new projects on the drafting table that need a legal identity. Although I cant speak for PPP, I can say that a new organization may be what's needed to satisfy our schizophrenic requirements and the new organization could benefit from our discussions.

The thought has occurred to me that we have been so open about our discussions, that we may be vulnerable to impostor PWP networks, set up to undermine our unity, or to gain some other advantage in the PD community in the name of patients. Andy Grove a pwp himself wrote a book called "Only the Paranoid Survive." Pharmaceutical companies are known for setting up patient committees and coalitions for influence and marketing advantage. I have seen this happen. If it weren't for the deception, some of these practices would be perfectly acceptable. This is the reason I had suggested that the unified group help us by creating consensus ethical standards for the sticky issues regarding conflict of interests.

A lot of options are open. I see this as an important opportunity not to pass up if we want to assert our essential role in finding and delivering the cures. We will probably soon have to take a step back to define concrete proposals for organization and management of this effort.


Perry

[indigogo]

This has long been a topic of consideration (years!)

I'm beginning to lean in the direction of "yes" for reasons of legitimacy and security. It will take careful planning.

In the meantime, we can move forward with the advocacy portion.

Perry - I do believe we are on the same page!

[indigogo]

this is my working definition of "Hope", one that is grounded in reality:

In "The Anatomy of Hope", Dr. Jerome Groopman writes, "Hope is one of our central emotions, but we are often at a loss when asked to define it. Many of us confuse hope with optimism, a prevailing attitude that 'things turn out for the best.' But hope differs from optimism. Hope does not arise from being told to 'think positively,' or from hearing an overly rosy forecast. Hope, unlike optimism, is rooted in unalloyed reality. Hope is the elevating feeling we experience when we see - in the mind's eye - a path to a better future. Hope acknowledges the significant obstacles and deep pitfalls along that path. True hope has no room for delusion. Clear-eyed, hope gives us the courage to confront our circumstances and the capacity to surmount them"

[jeanb]

Originally Posted by Perryc

I want to put a key issue on the table which hasnt been discussed much. Will this unified group become incorporated? This is a topic that has been discussed in the Pipeline Project for some time now. Without going into detail I only want to say that for this effort to deliver the results expected a new patient directed organization is probably necessary. It can become a home for other wayward PWP groups, and new projects on the drafting table that need a legal identity. Although I cant speak for PPP, I can say that a new organization may be what's needed to satisfy our schizophrenic requirements and the new organization could benefit from our discussions.

Perry

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

[paula_w]

Great discussion. I'm just listing the bits and pieces that I like from what I've read.

It appears that the last few weeks in August are vacation time for many. Doc John himself says he is booked until after the first week in September. I think we should use this time doing just as we are in this thread - there is plenty to discuss. Then we should plunge into the email database. Who what when where and how can be discussed prior to this time when everyone is available.

Names - I think philosophy is good for in the mission statement and accompanying introduction, but I like the idea of a more business-sounding tone for the actual organization or group. Academics and business people will hopefully be using it. 'Solutions' fits this tone, as well as patients as 'consumers'. We are going 'global' and you can put e- in front of just about anything. I think it should be action oriented as Peg said.

I hate to say it, but our hope, no matter how defined, has not been a priority for any changing agents thus far.

two cents,
paula

[aj04]

Carey and all,

I tend to be a detail person (in one life I was a book editor) so I have used a fine-toothed comb on the mission statement and made some changes. I did not color code them, but will explain below.


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.

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

Encourage patient involvement in the Parkinson’s community
Provide leadership for the Parkinson’s community
Provide education and understanding of Parkinson’s disease from the patient point of view
Work collaboratively with existing organizations to assist and inform ongoing and future projects
Collect and disseminate information
Canvas opinions on issues
Petition on behalf of Parkinson’s patients
Speak out about pertinent issues through press releases, the media, and the Internet

We do this through the operation of a website that acts as a virtual headquarters for networking and information collection and sharing and serves as a platform for the promotion of patient-driven projects worldwide.


Our Creed

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.
__



First, I am only making suggestions. I am not taking liberties. "Coalition" instead of "Action Alliance:" mostly because The Parkinson's Alliance is referred to as "the Alliance" and I would not trespass there. Also, using "Action" as an adjective for Coalition or Alliance calls PAN to mind. Given the brevity necessary to name an org,, I think using "Action" again is confusing and steps on people's toes unnecessarily. "Action," has the same ring to it as Peg described "Hope:" overused and devalued. Coalition has not been used here--at least not as a well known identity Well, there is CAMR, but I don't see any real problem there.. I don't know about Europe. And "Global Coalition" has a strong sound to it (perhaps too militaristic?) Merriam Webster defines it as "a temporary alliance of distinct parties, persons, or states for joint action" I particularly like the temporary part.

Names are tricky and I have spent enough (too much?) time on it already. Th rest of the changes were for accuracy, consistency, and sense. You can certainly call me ou t on any of them and I'll explain myself.

I will mention, as if you didn't notice, that I turned Tom's words into a creed. They are the best and most inspiring words I have read perhaps ever on hope and our rellation to it. And when it comes to hope, I am a severe critic. I thought having it there set a good tone. (Tom, do you mind?)
—

Speaking of good tones, the clock just struck 2:00, which means I have been a pumpkin for two hours now. That will be my defense.

"Good night and good luck."

[Jaye]

aj,

As another detail person, I wonder if there shouldn't be a comma in the "Creed" section right after "chance" [and another after "information" (optional)].

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.

And you have done a terrific job of pulling the thing together. I can put my heart and mind behind it.

J.