[chasmo]

that we need several good grant proposal writers. There is a ton of money out there for the asking. Like the song from Cabaret says, "money makes the world goes around!"

I'd like to see education programs for social agencies and the medical community. We could have firefighters check on homebound people for instance. They have the time to do that.They just need the training.

Thats just one example.

We need those people who are early on in their disease to get involved.

BTW it's great to see Greg and AJ posting again!!

Charlie

[Jaye]

Originally Posted by paula_w

To the orgs reading these comments, I would strongly keep in mind that this comes, not from the smiling faces you see with all the energy and good will pwps can muster up at conferences, but from the people sitting at home, many alone, who can't make it off the chair right now without crawling or suffering pain. These comments are coming from people who can barely type, whose shoulders are locked, whose mouths are caved in, who can't eat and have to worry about providing themselves with proper nutrition when they don't want to walk to the kitchen. From those who are lonely, who have nightmares, and then read about medical researchers paid to get industry off the hook when they make mistakes. From those who can't afford their meds. And sometimes we do wonder who the orgs really serve. Just as we wonder who anyone, with large amounts of money, really serve when we are not seeing results.
paula

This is worthy of being repeated frequently and everywhere.

Paula, you are eloquent.

[jackiehc]

Originally Posted by chasmo

that we need several good grant proposal writers. There is a ton of money out there for the asking. Like the song from Cabaret says, "money makes the world goes around!"

I'd like to see education programs for social agencies and the medical community. We could have firefighters check on homebound people for instance. They have the time to do that.They just need the training.

Thats just one example.

We need those people who are early on in their disease to get involved.

BTW it's great to see Greg and AJ posting again!!

Charlie

I am willing to help write grant applications, if we get to a point where we're in agreement about what we'd like to do. For those who haven't done it but would like to give it a try, many community education programs offer classes and there is a ton of info online.

One thing, though -- foundations and gov't agencies (like NIH) generally don't give grants to individuals so we would need an organization to use as a "pass-through" for any funding we would be requesting.

JHC

Jackie

[Todd]

Well, I'm certainly not surprised to see the direction this thread has taken. It has been uplifting and disheartening all at the same time.

I don't have the answers for all the "why" questions that have been raised. While each one does some good things for our community, there are obviously many problems and issues with "our" PD organizations, and I do not have the solutions to them either.

But that doesn't mean that I won't fight, or remain a thorn in their side until they realize that despite our disease, we're not just going to curl up in a ball and go away. They are supposed to be serving us, so I'll do what I can to insure that we make enough noise so that they're reminded of that. Whatever it takes.

While I prefer to do this in a polite, respectful manner, I am also willing to kick down the door and pull my own chair up to the table (as was mentioned earlier) even if it means I'll have to kick that door dozens of times before I finally get it open.

I understand the logistics, issues, and huge obstacles that stand in the way of the organizations merging to become one. It's a massive undertaking in which you will never please everyone, and new organizations will just sprout up yet again due to unhappiness with "one" organization representing us all. So much potential, yet so many impending issues.

Yet, can it be done, and done effectively? Absolutely yes. Each organization has amazing strengths to it. Can you imagine if they all decided to actually work together? Can you imagine the massive impact they could have? I can. And it frustrates me to no end.

You can spend all the time you want coming up with reasons why it "won't" work. Why not spend that time and energy finding reasons why it "can" work? And then, make it happen.

I get tired going into the grocery store and seeing the pink ribbon everywhere, on all the products in the store, in the newspaper and magazine ads, and having the checkout clerk ask me if I want to donate a dollar for breast cancer research. (Which I typically do, by the way.)

I get tired of seeing creative PSA's from countries like Canada ( http://www.youtube.com/watch?v=pN0nS_7qNwQ ) and Europe ( http://www.youtube.com/watch?v=B3IhU87Xptg ) for PD awareness, yet see nothing on a similar scale from the US.

And I get tired of seeing videos like the one I originally posted from Stand Up To Cancer, not because I'm against the cause, but because it frustrates me that "our" PD orgs can't put their petty differences aside long enough to create something as powerful to help raise awareness for our disease. It would certainly benefit them in the long run, just as much as it would benefit us. It makes me so angry that this is evidently too much to ask.

I can hear "our" orgs now: "Actually serve the PD population we're supposed to be representing? Hey, we just published a new book that we mail them for free. What more do these people want?" Gee, thanks for that.

So what's the answer here? To model ourselves after those that have succeeded at what we are trying to do. To look at other activists and see how they have successfully brought about change in their arena, and learn from them. (Act Up for one of many examples.) We will kill ourselves trying to recreate the wheel. So we need to look at those who've accomplished what we want, and utilize their knowledge in our fight. The old saying is: "The squeaky wheel gets the grease." Time to start squeaking!

It's important to remember that we don't just fight for us, but we fight for those that can't due to their disease and the devastation it brings into their lives physically, emotionally, spiritually, and financially. And those that are newly diagnosed every single day. If we still have a voice, some strength and energy, then we have a responsibility to use it to our fullest potential while we are able to. We owe it to our community, to our society, to our disease, to our fellow sufferers, and to ourselves.

Is it hard work, tiring, exhausting, and overwhelming? Yes, but what are the other options? Not good I'm afraid. The "status quo" is not working and it's time for a dramatic change.

I have personally been warned that my speaking out like this will essentially kill my business, PDTalks, Inc. and PDTalks.com. That I will "alienate" the PD community due to my views, and the "powers that be" in the PD world that have the ability to help me make my business a success and "welcome" in this community or not. So be it. This is much bigger than me, or my business. Sadly, they underestimate me. And I truly believe they underestimate all of you as well. Despite having PD, we have a powerful voice. It's time to use it.

This all goes back to my original point:

We've got to change the thinking from "me" to "we". What's it going to take?

[reverett123]

One only has to be concerned of such warnings if one is wanting to play the "game" that they control. If one is playinr a different game, they have little power.

Some more suggestions thrown at the wall to see if any thing sticks.

Form an organization. Board of Directors made up of PWP. Staff normal health. Members all PWP or caregivers.

Set criteria that we deem important. Immediacy (tomorrow is too late) Innovation (no more same old same old) Efficiency (low overhead) and so on.

Each year, rate each organization on those criteria and "award" tulips in each. Maybe a group dong everything right could be awarded a max of five tulips or so.

Each year issue a press release with the ratings. Don't beat up on the low end but praise the heck out of the high end. Since everyone can rack up tulips if they try harder there's no point in alienating an org that could be awrded an armful of tulips a few years down the road.

Todd's site gave me an idea. Use the "web ring" model and recruit second tier websites as members linked to the group via a nice tulip icon. Promote each other.

Originally Posted by Todd

Well, I'm certainly not surprised to see the direction this thread has taken. It has been uplifting and disheartening all at the same time.

I don't have the answers for all the "why" questions that have been raised. While each one does some good things for our community, there are obviously many problems and issues with "our" PD organizations, and I do not have the solutions to them either.

But that doesn't mean that I won't fight, or remain a thorn in their side until they realize that despite our disease, we're not just going to curl up in a ball and go away. They are supposed to be serving us, so I'll do what I can to insure that we make enough noise so that they're reminded of that. Whatever it takes.

While I prefer to do this in a polite, respectful manner, I am also willing to kick down the door and pull my own chair up to the table (as was mentioned earlier) even if it means I'll have to kick that door dozens of times before I finally get it open.

I understand the logistics, issues, and huge obstacles that stand in the way of the organizations merging to become one. It's a massive undertaking in which you will never please everyone, and new organizations will just sprout up yet again due to unhappiness with "one" organization representing us all. So much potential, yet so many impending issues.

Yet, can it be done, and done effectively? Absolutely yes. Each organization has amazing strengths to it. Can you imagine if they all decided to actually work together? Can you imagine the massive impact they could have? I can. And it frustrates me to no end.

You can spend all the time you want coming up with reasons why it "won't" work. Why not spend that time and energy finding reasons why it "can" work? And then, make it happen.

I get tired going into the grocery store and seeing the pink ribbon everywhere, on all the products in the store, in the newspaper and magazine ads, and having the checkout clerk ask me if I want to donate a dollar for breast cancer research. (Which I typically do, by the way.)

I get tired of seeing creative PSA's from countries like Canada ( http://www.youtube.com/watch?v=pN0nS_7qNwQ ) and Europe ( http://www.youtube.com/watch?v=B3IhU87Xptg ) for PD awareness, yet see nothing on a similar scale from the US.

And I get tired of seeing videos like the one I originally posted from Stand Up To Cancer, not because I'm against the cause, but because it frustrates me that "our" PD orgs can't put their petty differences aside long enough to create something as powerful to help raise awareness for our disease. It would certainly benefit them in the long run, just as much as it would benefit us. It makes me so angry that this is evidently too much to ask.

I can hear "our" orgs now: "Actually serve the PD population we're supposed to be representing? Hey, we just published a new book that we mail them for free. What more do these people want?" Gee, thanks for that.

So what's the answer here? To model ourselves after those that have succeeded at what we are trying to do. To look at other activists and see how they have successfully brought about change in their arena, and learn from them. (Act Up for one of many examples.) We will kill ourselves trying to recreate the wheel. So we need to look at those who've accomplished what we want, and utilize their knowledge in our fight. The old saying is: "The squeaky wheel gets the grease." Time to start squeaking!

It's important to remember that we don't just fight for us, but we fight for those that can't due to their disease and the devastation it brings into their lives physically, emotionally, spiritually, and financially. And those that are newly diagnosed every single day. If we still have a voice, some strength and energy, then we have a responsibility to use it to our fullest potential while we are able to. We owe it to our community, to our society, to our disease, to our fellow sufferers, and to ourselves.

Is it hard work, tiring, exhausting, and overwhelming? Yes, but what are the other options? Not good I'm afraid. The "status quo" is not working and it's time for a dramatic change.

I have personally been warned that my speaking out like this will essentially kill my business, PDTalks, Inc. and PDTalks.com. That I will "alienate" the PD community due to my views, and the "powers that be" in the PD world that have the ability to help me make my business a success and "welcome" in this community or not. So be it. This is much bigger than me, or my business. Sadly, they underestimate me. And I truly believe they underestimate all of you as well. Despite having PD, we have a powerful voice. It's time to use it.

This all goes back to my original point:

We've got to change the thinking from "me" to "we". What's it going to take?

[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