[reverett123]

Don't overlook the power of letters to the editor of your local paper. That is about cheap and grassroots as you can get.

At the other extreme, a national organization governed by a Board of PWP overseeing a staff of non-PWP would allow the former to set policy and the latter to do the work. Also, setting a time limit on Board membership would force a solution to the problem of each of us having our limits.

If something shows signs of getting off the ground, I have a domain name I would be happy to contribute - "ParkinsonsOnline.net"

There is one caveat to that offer, I also have "ParkinsonsOnline.org" that I am (slowly) developing myself for educational purposes and want to keep. You are welcome to visit and see the tack I am taking, just wear your hard hat.

A possible video might be a series of short video segments (say 3 to 5 minutes) strung together in which individual PWP talk of what we face. An outline of critical points as a starter would be a good idea and then selection of the individual segments that best made those points. Put it on the website, Youtube, etc with copyright that allows free distribution. Maybe even make it such that a neuro could give a copy to the newly diagnosed to help them come to terms with PD. Actually, there is room there for three or four different ones. They could be an excellent way of spreading the new group's name around as well. Just splash the URL across the bottom of the screen all the way through.

[Splanton]

Good evening! I've scanned through page after page of input into the question that's been posed; I'd like to offer a somewhat divergent approach to thinking about organizations. "What's wrong with the PD community?" might be answered with something like "Why, nothing is 'wrong' here." By that, I mean that the various and sundry organizations and groups seem to be behaving in a predictable, bureaucratic, manner, and keeping their courses as might have been predicted. There are series of issues that every group, organization, or private business has to deal with if it is to survive. One of these is Weber's "Institutionalization of charisma"--how does the organization formalize and carry on the founders' vision(s)? Another is "succession"--how is the governance arranged to perpetuate leadership in general/the leadership of one or more individuals? Yet another is that of independence vs. the spectrum of alliance/merger/subordination to others? Now, I don't know where any particular PD organization stands on any of these, but these are a few of the key issues I would "tag" as being in the "hidden agendas" of any organization(s) contemplating change, and they'd have to be addressed/solved early in any process, if the process is to be successful. That they're "hidden" makes identifying and dealing with them even more difficult from "outside" the particular organization.

I'll stop at that and hope that I'm not way off-target with a few observations...
Stan

[paula_w]

Very useful .....thank you! Helpful to us as well in trying to gel. It's gotta be amusing to watch a bunch of smart but distracted, knoweldgeable but slow, people trying to connect. Lots of leaders, but leadership? who knows lol.

I know you were referring to the other orgs tho and am glad you are reading - you have much that you can access and contribute. We are so ready for something to change...

paula

Originally Posted by Splanton

Good evening! I've scanned through page after page of input into the question that's been posed; I'd like to offer a somewhat divergent approach to thinking about organizations. "What's wrong with the PD community?" might be answered with something like "Why, nothing is 'wrong' here." By that, I mean that the various and sundry organizations and groups seem to be behaving in a predictable, bureaucratic, manner, and keeping their courses as might have been predicted. There are series of issues that every group, organization, or private business has to deal with if it is to survive. One of these is Weber's "Institutionalization of charisma"--how does the organization formalize and carry on the founders' vision(s)? Another is "succession"--how is the governance arranged to perpetuate leadership in general/the leadership of one or more individuals? Yet another is that of independence vs. the spectrum of alliance/merger/subordination to others? Now, I don't know where any particular PD organization stands on any of these, but these are a few of the key issues I would "tag" as being in the "hidden agendas" of any organization(s) contemplating change, and they'd have to be addressed/solved early in any process, if the process is to be successful. That they're "hidden" makes identifying and dealing with them even more difficult from "outside" the particular organization.

I'll stop at that and hope that I'm not way off-target with a few observations...
Stan

[TommyI]

Hello all. Just joined Neurotalk because I was directed to this exciting thread by Suffolk Chris. So you've him to blame.
I have not read all of the posts so forgive me if I am saying what has already been said. In a sense I wanted to come to this page fresh anyway to see if my thoughts do correspond with any of yours.
My view is that patients are the only way to accelerate the cure - with passion, drive, media profile, insight and teamwork.
It is the final one of these which presents the biggest problem. The US has a number of PD organisations and then there are also numerous patient-only internet and advocacy groups. You, in a sense, suffer from too many factions - too many slightly opposing views and objectives. In the UK, we have one organisation the Parkinson's Disease Society and most patients are happy with them. They provide a good service and everyone knows about them. But by the same token they struggle to engender the passion and determination and the sheer sense of willpower demonstrated in this forum and others like it from the patients themselves. The UK is far more prone to inaction or reaction rather than proaction.
So may be the disparate nature of the US PD organisations has made you lot more engaged with your illness, more emotive and more motivated. Perhaps the frustration you have in your organisations is an opportunity to form a Patient Alliance which does not have to be anything more than a database of patient's email addresses.
There is enormous power in "Patients doing it for themselves," but this power is magnified proportionate to the number of them doing it. Other organisations which are not patient led cannot get involved with books like Monkeys in the Middle, because they are trying to work within the system. It is right that they should. But there are times when the system does not work for us e.g. GDNF, speed of clinical trials, side effects of drugs etc.
It is on these occasions that we need access to a strong, credible and completely independent patient-only voice.
We all have access to people with Parkinson's - yes? Why not write to them all and ask if they would mind their names to be added to a central database
which could be controlled by a central Steering Committee which could co-ordinate campaigns we feel really passionately about backed by huge numbers of patients. This is a way to make a real difference.
This could be US-only or even better it could be global. It would be fairly simple to organise and would make real impact fast.
I would be happy to propose to my organisation, The Cure Parkinson's Trust as a patient-led Charity, that we might consider being the administrators of the database, if that helps this project get underway. We have just linked up with the PDUK for this very reason anyway.
Once we have the database we could really raise the profile of Parkinson's through sheer weight of data. We could have a global initiative to call for the release of GDNF from Amgen, we could petition on issues which are fundamental to patients but which do not fall within the scope of so-called "patient organisations" and we could even raise funds for specific things we felt were worthwhile on a global scale. All the initiatives could be backed up by the results of surveys which could come from a central database resource or the administration could be handled on a more regional basis and communicated to the Steering Committee for dissemination.
It may sound far-fetched, but I think this is do-able.
Views/criticisms welcome - this is just an idea at the moment and I have not got any further than this in my own head. It certainly needs further discussion if you like the concept.

Tom Isaacs

[indigogo]

Tom - welcome!

Your comments are insightful. I do believe you are right that the fractionalized nature of the U.S. PD establishment fosters patient discontent because it has become too easy for one org to say, "we don't provide that service - they do," and, when questioned, the "they do" org says, "no we don't!", and so whatever that unmet service or need is just slides into the space between.

I think your idea of a global patient database is a good start and doable. We already have established a good working relationship with UK patients, as you know so well, and our needs, complaints, and challenges easily cross borders.

This is also a movement that can happen separately and independently from the U.S. patient desire to see a unified PD organization. They really are two different issues that have become a bit mixed up in this thread. Unification is only one area that concerns the U.S. patient; there are other issues, as you stated (GDNF, speed of clinical trials, side effects of drugs etc) where a strong, independent patient voice is required.

The next PD World Congress is occurring in Glasgow, September 2010 (you are on the organizing committee, yes?). Perhaps that would be a grand occasion for a patient meeting, giving us 2 years to organize?

So glad to see you here!

[paula_w]

First of all, in case this expression isn't used in the UK [sight for sore eyes] - it's a compliment..lol

Welcome Tom....!

I think your suggestion of a database is an excellent one and your offer to help is like a ladder in a fire. I have a doctor's appointment to get to early, have to keep this one short - but knowing your accomplishments, I think you are the ultimate advocate and with a positive attitude and sense of humor - well - it's the only way to go.

Thanks for alerting him suffolk Chris.

paula

[reverett123]

I've been meaning to call but life has been a little rough here. Beginning to settle down, however, and will try to reconnect this week.

Glad to have you.
-Rick

[Jaye]

This old advocate's advocate is pleased beyond words to see our leaders joining up. I see sufficient harmony here already to generate optimism in the ranks.

An all-patients roster with as many names as possible is something that has worked for me in a much smaller population (non-traditional students at a state university). Being able to say we had 300 members instead of just the 25 that were active opened a lot of doors and bought a lot of chairs. I would be happy to see it happen without waiting for another expensive trip.

And 58 members of my mailing list agree with me. (Just as soon as I compile one, LOL.)

Jaye