[leonore]

The work you all are doing in crafting this statement, and creating this global alliance is absolutely astonishing. You all are indefatigable! I'd like to throw in a few extra ideas and points.
I feel that the wording would be strengthened by adding something along these lines:

One of the key values of the Parkinson's Global Action Alliance being an organization comprised primarily of people with Parkinson's is that those with a degenerative disease have a unique feeling of emergency which drives our imaginations and creative core. This sense of urgency to find ourselves a cure and improve our own lot is white hot, needs to be respected by those without the disease, and is unparalleled in any community of people, however well-meaning, who does not have the disease.

One additional point to add to the reason for having a resource-driven web site controlled by us is that those who are newly diagnosed need to have a central portal to enter when they first seek information and support, rather than be overwhelmed by the plurality of PD organizations which bombard them in the present.

Since I'm trying to enjoy my 2-week Cape Cod vacation with four or five extreme motor fluctuations daily, I defer to you all to play with my ideas and insert them, if you choose, into the mission statement. best, Leonore

[Jaye]

My beloved hubby and I were surprised to find in our mail yesterday a letter from a major Atlantic Coast teaching hospital, informing us that we were to be honored at a symposium in October, with other Clinical Partners, for the time and effort we've put in to participating in research there. Someone noticed. Usually I would prefer they didn't notice. Staying in the background is my specialty, since I learned that I have no political sense, and since I lost touch with a lot of things during about two years of my life that were given to pain, a hip replacement, and recovery.

I can write (slowly), copyedit, pay attention to details, and occasionally pop up with a really terrific idea or an interesting video from the Internet. I have set up and/or used several small databases for employers, but none of the newer "relational" ones, just flat files. I like to do background information, too. I'm a good friend, but I'm not the cocktail party type, I'm told. I tend to see the spiritual side of things. I'll just as readily lay hands on someone for healing as I'll discuss the best kind of home Wi-fi system and how I set mine up. (Yes, Perry, we're going to the promised land, remembering always that we're glad that others are prophesying in the camp, to help bear the burden of all that needs to be done for the people.)

With all this talk of EHRs, I remembered that I once held membership in the American Medical Record Association and held a certification I'd earned after two years of schooling. I Googled for them and found the name had changed to American Health Information Management Association. Come to think of it, that is what I did for a few years. So I called them to ask about reinstatement, which they are quite wiling to do (for a fee). This would give me access to a lot of information and advice that might be helpful. Their website has a lot of info on Electronic Health Records. I don't know if it would be helpful, but I'm willing to brush up to fill in the details where the "big picture" leaves off. Remember, I'm no expert.

Only thing is, I tend to be late, and I have a good marriage that I spend a lot of time on, and church activities, and beads to string, and so forth. And I tend to get passionate, but I'm trainable.

So that's my current resume. What's the job, again?

Jaye

[annefrobert]

Hope for a better tomorrow with more respect of human beings, either PwP’s or their families ,
all this brings joy and raises best motivation,
So first, big thanks for such a great thread and congratulations for all the great ideas for a great Alliance…
and for all the long and thoughtful posts.

Here are few comments and suggestions, questions and requests, too,
about the Alliance, if ever they may contribute to build the whole entity together.

See pdf for a much better presentation




1. The Alliance has been said it should/could/might or must be an international worldwide union of PwP’s,
the one voice to support and defend common interests
○ All the time, worldwide
○ and each time anywhere in the world when and where it is more particularly required

Questions :
Do you see the Alliance as a US non profit organization PwP’s from other countries would join,
or is it too be built as a network with no border?
What about advocacy/defense out of USA?


2. The Alliance must support the most open-minded and respectful dialogue
○ With physicians and neuroscientists involved in PD and their collaboration
○ in multidisciplinary groups with participation of other professionals from from social sciences (psychology, sociology, philosophy, epistemology;ethics, anthropology, economics, education,) … as such a chronic disease with multiple disabilities is unfortunately far from raising ‘only’ medical and scientific problems …. all of these professionals would enrich the global vision and understanding of PD

3. The Alliance must support the worldwide respect of international and national laws and of humanistic ethical values
○ One voice from one allied international force to fight for respect of PwP’s et al.* basic rights and ethical values everywhere in the world
○ One voice to defend the international laws and rules of humanistic medical care and of good science and its applications to PwP’s, life and its quality
○ One voice to ask for support and fight against
○ One voice to give information and fight against conflicts of interests, cheats, lies and at final quackery of very few but extremely powerful searchers introducing 'bugs' forever in the theories, an unbearable damage to knowledge of humanity
○ One voice to denounce the violation of rights and of PwP’s behaviors as in the problem of dopaminergic agonists.(*families, friends),
one voice to claim for neurobioethical rules defined and have them respected


5. The Alliance internet database for advocacy, action and research must define clearly
its goals as a specificworldwide PwP’s database

About research, an internet database for research is an excellent idea …BUT.

○ Concerning data gathered from PwP’s : if testimonies, reviews of litterature, works or even trials had ever been required, we would most probably have been asked for
○ This means in no way they are not valuable but that currently not many in this world have ever had the idea or felt enough confidence to work for an evidence-based demonstration about the interest of PwP’s data from a scientific point of view.
○ Indeed no scientific group, no medical society and of course no lobby and no firm is ready or even half open to the idea of patients or e-patients empowerment, otherwise we would not discuss about it right now.
What’s more, habits and rules do not really allow such possibilities.
Yet, there is very low probability for us to be accepted as reliable partners in the rows of research

In order to avoid harsh desillusion, to have legitimacy recognized and to reach our goals and change our future, we must talk about and work upon the reasons, ‘how and why’ PwP’s have been asked far too merely to give their own contribution to collaborative works this, at a worldwide extended scale.


6. The Alliance must afford a real enrichment in all fields ,
and developp new strategies to change the way we and our testimonies and works are looked at
• We must not look for recognition of the value of what we may know, think or believe from our readings, scientists will not go for this knowledge because in these fields they are the masters and we will always be considered as subjective amateurs.. so no trial for mimicry, it is a too risky choice.
• Our strength lays too in our difference, in the specificity of our experience, about what we may live, feel through/from our bodies , and then link together and understand with the help of our knowledge.

6.1 We must change the current medical and scientific vision about our illness.
o Because for most scientific searchers working in their labs an illness means nothing else than a bunch of definitions given by medicine and the choice of the required experimental models -this is no criticism, scientific searchers are not supposed to be involved in our lives, and when we discuss scientific data we ourselves ‘play’ a very interesting intellectual ‘game’ and forget easily we talk about what is devastating our lives-,
○ Because only medical points of view are applied and current theories still
focuse upon the “dopaminergic neuronal loss in substantia nigra” as the main problem/interest/cause

Well, for all these reasons, indeed one of the major goals for a PwP’s scientific database should/could/might be to offer the most continuous updated integrative vision upon PD, a/the reference of the most global vision one may have about the illness , assessed by our multidisciplinary partners and us
This is something that no one would find anywhere else, a very useful “tool” for many, built with all data and among them PwP’s ones, in same database, their “natural” place.

6.2 More we must certainly not remain focused upon PD, to cross frontiers between chronic diseases is then an important goal, very serious reasons for this assertion
o 1 because a bunch of illnesses that look very different when seen through their specific clinical features are somehow sisters or even twins when comparing several fielss of their underlying process.
o 2, because it is only unbearable to learn that an important piece of knowledge, one of the lacking key to an illness has been known in another field or research actually for 10 or 30 years
o 3 Because research upon PD is particularly far behind other illnesses in several fields concerning mechanisms, multidisciplinary cross exchange of data between sufferers and professionals are the most fruitful –own current and on going experience to be described later –
o 4, because we are all human beings, witih same asks, same sufferies and
same types of daily problems, so better share searching and findings here too

To finish…….

○ A question We exchange a huge amount of free informations here in the forum, what about fees for copyrights when it will be from publications database to our database?

○ A comment :PwP’s on Neurotalks are mostly US citizens and, as so, very many, well organized and efficient, big big thanks to all of you ..........
and a request
for non US ones, to understand most of the details among your posts requires to learn or update datailed knowledge about US laws, FDA, US organizations, Advocacy database….Thanks to explain sometimes more..or to avoid when useless details

○ A suggestion: I propose to non US participants from non –english countries to join forces to reach other e-patients groups you know or I may as to spread the news and be able to be full partners
(inded, spanish -, portuguese-, german- and french-speaking with motherlands of these languages and Northern Africa, Northern and Southern America……..;-) it looks like UNO in its good days!)

○ Friendly thoughts to my two partners PwP’s
in a very tiny and informal group we would call at times the Tripartite Allied Forces. Guess why..
We have worked hard together from early 2006 to end of 2007 upon two beautiful projects about research and scientific data.
Unfortunately, various reasons have stopped us before total achievement but I have no doubt they will agree to present them the new Alliance .
Let’s ask them.
Dwight? Winston? Charles asks for contact.. . (Secret names of course….)
They’ll answer..no doubt, they are thoughtful, committed.........and as so both on this thread

Hugs to the two of them and to all


Anne.

[indigogo]

Anne - I started to reply in detail to your wonderfully thorough and thought-provoking entry, but it is much too late on the West Coast of the US to do it justice!

So, I'll just say for now that you have stated powerfully many of the issues that lie at the heart of PD research, researchers, and state of care. You've described clearly many of the things that are on my mind, and that are of such concern to all of us.

Plus, you have highlighted the true international nature of this venture, our audience, and the details we have to keep in mind as we go forward in order to make our vision reality. It's easy to say we're global; what does that really mean in terms of an official, legal organization? I want it to be international; your post is the best evidence of why: although we struggle as US PWP with federal agencies and organizations, as members of the international community of PWP our concerns as patients easily cross borders.

I was especially taken with your following comment, and think it deserves a lot of thought (as does all of your comments):

"In order to avoid harsh desillusion, to have legitimacy recognized and to reach our goals and change our future, we must talk about and work upon the reasons, ‘how and why’ PwP’s have been asked far too merely to give their own contribution to collaborative works this, at a worldwide extended scale."

Thank you so much for your contribution - I hope it won't be the last! We (I) have a lot to learn about PD in the rest of the world; I am humbled.

[TommyI]

We are all humbled by Anne - no-one has thought more intensely about Parkinson's than her - "The Godmother"? !!!
I am a bit snowed under for the next two weeks and so will leave you guys to get on with fine-tuning the mission statement.
In the meantime here are my thoughts on what I have only scanned so far.

Firstly I think we need to be careful not to be a threat to other organisations. We are different and we are should celebrate and promote that difference.

It might be worth just defining what those differences are so that we know how best to present ourseves to the outside world.

Sorry - I have no time to do this at the moment - but for me the principal ones are - we are patients, we are passionate, we have a sense of urgency, we are global, we are united, but perhaps most impoirtant of all we are the true voice of the patients

I feel it is just so important to build this gradually - we need to be credible, accepted, innovative and as Anne says "one voice".

Personally I don't thin k we do want to become an organisation - because an organisation is too inflexible and doesn't work on a global scale with a new venture. This is as Sheryl says "a network" - the patient community. My view is that we should not sound like an organisation either because that makes us threatening. May be in time we do - but not yet.

I wonder whether we should take Leonore's concept of urgency and try and use the word expedite in some way.

Perhaps

eXPDITe with the strap line
People with Parkinson's, One Global Network, One Voice, One Call to Action


This is not quite right and needs work - but just wonder if it sparks any ideas. I quite like it because it has our main point of difference "urgency" it has the PD and the "X" i.e across the world - although that bit is a little difficult to spot perhaps. Food for thought.

I am perfectly happy with AJ's ideas but just throw this out there as an alternative.

Gotta go


Tom

[paula_w]

Anne,

OK - I love a good mystery. Atticus? Harry? Eduardo? Secret partners - show yourselves. [I know who one is but not sure about the other] ... lol Fantastic post Anne.....am honored to have your knowledge and experience.

paula

[paula_w]

I have re-read Anne's post, aware that all she says is right, and trying to think of how patients who are progressing [most in advanced stages and feeling the urgency] can overcome such barriers. I was becoming enraged, thinking of all the people with money, misusing it, patronizing sick people. Well, that will drive you crazy in about 5 minutes. So I started thinking about what else to do or suggest. It came back to reading this e-patient white paper again. So just in case you haven't, I'm posting the link again.

We will have detractors; those who don't think we will ever pull this off. Those who focus on what we do wrong and not right. Stay the course and read Carey's signature line if you feel discouraged.

Here's the link for encouragement . THere are others like us.
http://www.e-patients.net/e-Patients_White_Paper.pdf

with encouragement,
paula

[Jaye]

That bothered me, too, Paula. I don't just have the thing myself, some of my dearest friends have it and are farther along than I am. Not for nothing did I meet up with six different PWPs on my recent journey across the U.S. of America and back. I like us.

Couldn't we do with the word "International," rather than "Global"?

"International Front to Defeat Parkinson's Disease"?

Jaye

[jeanb]

AGREE with you Carey --

Plus this quote from Anne strikes a chord with me as well:

"Our strength lays too in our difference, in the specificity of our experience, about what we may live, feel through/from our bodies , and then link together and understand with the help of our knowledge."

jean

Originally Posted by indigogo

Anne - I started to reply in detail to your wonderfully thorough and thought-provoking entry, but it is much too late on the West Coast of the US to do it justice!

So, I'll just say for now that you have stated powerfully many of the issues that lie at the heart of PD research, researchers, and state of care. You've described clearly many of the things that are on my mind, and that are of such concern to all of us.

Plus, you have highlighted the true international nature of this venture, our audience, and the details we have to keep in mind as we go forward in order to make our vision reality. It's easy to say we're global; what does that really mean in terms of an official, legal organization? I want it to be international; your post is the best evidence of why: although we struggle as US PWP with federal agencies and organizations, as members of the international community of PWP our concerns as patients easily cross borders.

I was especially taken with your following comment, and think it deserves a lot of thought (as does all of your comments):

"In order to avoid harsh desillusion, to have legitimacy recognized and to reach our goals and change our future, we must talk about and work upon the reasons, ‘how and why’ PwP’s have been asked far too merely to give their own contribution to collaborative works this, at a worldwide extended scale."

Thank you so much for your contribution - I hope it won't be the last! We (I) have a lot to learn about PD in the rest of the world; I am humbled.

[Todd]

[QUOTE=indigogo;349008]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.[quote=indigogo;349008]



With all due respect, I have read each and every response in this thread (a thread that I initially created remember) and I stand by my original statement and intent. In my personal opinion, the direction is headed the wrong way, and while I commend the effort, it wasn't what I originally proposed with the opening statement in this thread.

I am all for a unified patient advocacy front. But I believe we are trying to put the cart before the horse with the plans and ideas I am reading about. With the involvement of many core Pipeline people, whom I greatly respect, I again say that the direction this has taken is more suitable for a PPP project and not a larger scale effort from our community.

I still strongly believe that the first positive step in the right direction is for us to push the orgs to come together and create a unified public marketing campaign to create much needed exposure for our disease. With increased public awareness comes increased public support, both financially and politically, and that benefits everyone involved.

Once we make our voices heard in the arena of public awareness through a joint effort marketing campaign, the rest will follow. Trying to recreate the wheel is pointless. Look to those that have gone before us and had great success and model our approach accordingly. I've provided examples of this and continue to wonder why our orgs can't do the same.

It's a fight I'll continue to pursue. You want to go a different direction, while it's not what I originally proposed, I hope it turns out to be successful. I mean really, the more sides we can hit them from, the better.

But I only have time, strength, and energy for one grand fight and I'm choosing public awareness, because the overall benefits to everyone in our community are phenomenal, as other organizations before us have already proven.

Fight the good fight.