[Perryc]

In a discussion at the Parkinson Pipeline Project meeting yesterday regarding the response to this thread, I pointed out that there was a similar patient empowerment effort previously which no doubt inspired Stan with all his research skills to find out more and keep us all informed as he has been doing for a number of months for the 'Pipeline Project' list. Between Stan and Carolyn and other trackers led by Linda Herman, the Project keeps up with all the news and maintains a data base of up to date information on all treatments in the pipeline (to receive this information, just sign up at www.pdpipeline.org). It has taken a group effort to fill the role previously played by Murray Charters for PPP (may he rest in peace).

Stan's link to the report of the first meeting of the "PD Patient Congress" which was later named "Parkinson's Alliance" tipped the balance for me to respond to this thread which raises issues very important to success in the advancement of PD research. Reading the PARKINSN list post reminded me that I am probably the only PWP advocate who attended the Miami meeting who is still active in National PD advocacy. I guess that makes me an old timer (I certainly feel like one), and gives me license to offer sage advice (LOL)

Past Experience. Carol Walton who for many years has been executive director of PA, was one of the organizers of the Miami meeting, which began as an effort to empower patients. The effort was fatally flawed from the beginning because it was set up as the exclusive domain of one national PD organization to somehow sponsor the voice of patients, and much of the meeting was spent arguing that point with one strong delegate (caregiver). I agreed with this outlier, but was more willing to compromise for the sake of moving ahead. Soon after this auspicious start the mission changed, and the organization was taken over and funded by the Tuchmans (Marty and Margaret who is a PWP) who were interested in seed grants for scientists and matched all contributions. The PA uses Carol's skills to plan fund raising events including the Unity Walk and Team Parkinson, featuring John Ball at the LA Marathon. All of these are good for science, careers, and PD basic research, which I have always valued highly and never criticized, but they are a far cry from the original intent.

I myself advocated strongly for NIH research funding and played instrumental role in opening collaborative relations between the PD community and NINDS in 1999 and in creation of the NIH Parkinson's Research Agenda (2000-2002), which was the most important PD research plan ever. Then I began working with the FDA which quickly became a very compelling agenda because no one else was addressing this in the PD community and the complexities of the 15 year pipeline to realize the benefits of science seemed to me to overwhelm any other consideration for someone with PD now. Fortunately, I found other PWP who understood the ramifications of this inconvenient truth and helped get the message out. Now most of the PD organizations are working where I initially found an open field, so we have succeeded to some extent. However, I feel that the voice of the patient is still needs to be stronger and more widespread.

The advent of Patient Advisory Councils by PD organizations is also a sign that our message is being heard, not just for PD but throughout the health care system. Although I think that part of the intent is to replace truely independent patient groups like PPP, with Patient input that they can better control, I see this trend as positive, because at least they are listening. My only fear is that PWP impact will be diluted if separate advisory groups divide the patient interests the way that separate orgs divide the community's interests.

Pipeliners. When I read through the 13 pages of response I realized that the majority of the posts were from active Pipeliners or formerly active Pipeliners. I dont know what that says about me or the Pipeline Project, but I have noticed that all current and formally active PPP members are able to think and make their own judgments about what is in the interests of patients, and all are willing to speak up firmly and politely (with some notable exceptions) for the Patient's perspective.

I am not suggesting that the PPP become a vehicle for the aspirations of the those posting on this thread. The PPP has a narrow focus on making good use of our status and knowledge from working with FDA staff and the therapeutics development processes for 6 or 7 years. I was the first PD advocate to explain the importance of FDA and Industry to our quest for new therapies, and was allowed to operate independently without interference from turf conscious PD organizations. Others recognized the value and joined in to make us what we are today (with all the +'s and -'s). I think that objectively we have accomplished a lot to make the PWP voice heard.

I think the PPP is too identified with me personally, as the primary proponent of the group for so many years. Most others have alternate identifications. I have been trying to change this so the value is retained for what its worth, as I become less able.

What I can offer to PD advocacy is experience with the challenges of establishing a voice for patients that has only patient interests to answer to. I must say that I shutter at the thought of trying to start a grass roots organization with no budget to reimburse people for necessary travel, and relying on voluntary efforts for technical skills to develop data base software which meant for us starting over three times because the volunteer could no longer contribute before the job was done. PPP is therefore trying to maintain close affiliation with PDF and still retain independence.

In sum, I have had the goal of greater empowerment of PWP in a more unified PD community for a long time. This is not power for its own sake but power necessary to reach the cures.

Perry

[pegleg]

You are the reason many of us got involved in advocacy. I am certain I am not alone in saying how much you are appreciated.

Peg

[jeanb]

Six months ago, two people started the promotion of the PD Tulip design with the dream for it to become the symbol of PD awareness in the U.S. An email and letter-writing campaign, a website, and a grant to purchase pins started the effort. Now this tulip is being worn as lapel pins by thousands of PWP. And it is being used for PD awareness by diverse PD groups across the nation on websites and promotional materials. (including this message board - thank you, NeuroTalk!) In addition to this, people from all over the world have downloaded the PD Tulip graphics.

Two people started the PD Stamp grassroots effort to have the PD Tulip made into a stamp for Parkinson’s disease. With the initial purchase of a domain name, a website was created. And thanks to donated programming work, an on-line petition is active, and nearly 3000 people have signed in support. Along the way, this effort got the attention of two major PD orgs. After some private talks, one of the orgs decided to help with the project (and they have been a big help -- with no funding asked for or received.)

Anyone can create a YOUTUBE video, and then upload it for all to see.

Anyone can do web searches to find boards and blogs and sites for promoting awareness.

Anyone can mount an email or letter writing campaign.

Anyone can create a simple website.

With the time and efforts of a few individuals, much can be accomplished with little or no funding in our efforts "to change the world."

[TommyI]

Wow there are some big hitters on this forum. All people who have found fulfilment in advocacy and contributed so much. And Perry you should know by now that for most of us you are the Godfather of Advocacy. When Marlon Brando said he was "disappointed" everyone shook at the thought of being disloyal to the head of the Corleone family. When you show disappointment we ........ well we also shake and feel disloyal!!
Please don't ever be sensitive about perceived breaks in the ranks. I know I have only been on the periphery but perhaps that gives me a better view of things. You must know that you are held in the highest regard by so many people and Pipeliners has done more than any other single patient-run organisation to give voice, hope and credibility to patients.
Your wisdom is beyond reproach and you have been and continue to be an inspiration to us all.
So please no horses heads on my bed!


Thank you for all your encouraging responses to my post. As my suggestion is slightly removed from the "state of PD organisations in the US" I might take it to another thread. My thought was really to have a structure for the global database so that each member country or region could take responsibility for their own database and communicate messages and/or surveys initially which then fed into the steering group.

Chris and I could handle UK for instance, Fulvio Spain (?) and I know through my EPDA connections patient reps from most other European countries. So if Europe fed into me and you got the USA sorted out and appointed one or two people to co-ordinate the project. Then initially I would propose we also approach Canada, Australia, New Zealand and any other countries this forum extends to. I bet before too long we would have amassed access to a huge database of patients.

This would give us enormous power as a group to deliver clear messages to the Press about the Parkinson's patient views on a global scale and also to disseminate important information to patients. It could also be used as a rallying cry; a global call to action. Imagine if we had had this resource in the GDNF debacle.

The key will be not to abuse the database; to use it only for matters of absolute importance. That way it becomes like the "Batphone".

It will also be crucial for us to take a sensible and unpolitical approach to the set-up process - always remembering the big picture. I, for instance, am quite happy not to be involvced in the instigation of this - I just think the facility would be amazing.,

Show of hands for support? Any further ideas? New thread?

Tom

[Jaye]

Originally Posted by pegleg

... I am certain I am not alone...
Peg

Thank you for your humility, Peg, and yes, you do speak for a lot of us when you praise one of our most productive advocates. Some of us are in the background, some in the foreground. Many of us have done our part, and more. Many have yet to find a way to do theirs. It's a a time for "we," and a a time to support each other.

Thanks be to one and all, for all we have done, for all we do, for all we have yet to do.

[paula_w]

It is important to know the history of how we got here. There have been strong advocates paving the way. I learned a long time ago that you do not get into advocacy for any credit you will get. You get into advocacy because something or someone has inspired you, and you have goals you want to accomplish.

IMHO, if it isn't going to result in a change - a direct change - in the patients' lives, it isn't worth the energy. This sometimes involves tearing down, and sometimes involves building up.

THe record speaks for itself, which I think is one of the reasons for this thread - to create that record. In the last column on a spreadsheet, check and describe the direct benefit to patient for each project. It should tell a story.

paula

[indigogo]

Don Perry,

I'm with you all of the way until this last statement in your next to last paragraph "PPP is therefore trying to maintain close affiliation with PDF and still retain independence."

As noble an effort as that may be, it is a fundamentally and fatally flawed proposition. (Read all that has come before in this thread.) Due to the very nature of any non-profit organization, the organization is beholden to their board and donors first, their client base second.

A truly independent patient voice will always be at odds with any one and/or all of the Parkinson's organizations.

This is a neutral statement, a natural situation - it just defines the environment in which we are laboring.

It's taken years of these kinds of battles to finally get it knocked through my head. The orgs have been very responsive to patient requests for a greater voice within their structures of decision making. This is why board positions, advisory councils, and committee and leadership memberships have been created for patients over the last few years. They are making places for us within their organizations.

Our failures have come when we push for something that is not organizationally in their best interests. Your PPP struggles with PDF and others' with PAN regarding national leadership come to mind. Although fought with spirit and integrity, they were battles bound to lose because they didn't fit structurally; it's like trying to change organizational DNA.

Seems like we should continue to work with the orgs as the allies that they are, while figuring out a way for the patients to influence our own futures with an independent voice. It should enhance, not supplant, the current situation.

This is a different task than finding more unity among the organizations. That is something that should occur whether or not we patients find our own way.

I think Tom's suggestion of a database is a great way to start building a patient network. If we use a common, simple program, like excel, that everyone has on their computers and is world wide (or one of the new online google programs - whatever!), then we won't have the trouble of stopping and starting over. And it is free. I don't think we need a budget for travel. If we think we need money up front, we'll never start anything.

I'm tired of fighting against the organizations. We need to figure out an independent way that allows us to work together.

[paula_w]

Did your post just appear or did I miss it the first time? - I could swear my screen didn't have yours up at first. Oh well.

I think your idea of a database is not only a good idea, but a necessary one. The only way to guarantee that people know what everyone is doing or what the options are when wanting to help, is to have it all available to see.

Advocates should try to avoid duplication as well , or, conversely, need to provide what the pd community lacks...numbers on an issue.

I tried to think of a "reputable" gangster to compare you to in the UK, but I didn't know any. They all must come to America.

Great to be hearing from Europe!
paula

[paula_w]

Posting another link from Splanton, who could write a book called Splanton's Searches....he's an information gatherer who saves everyone a lot of time.

It's on patient advocacy:

http://tinyurl.com/5gy9gn

paula

[Splanton]

Thanks again, Paula!

I was attempting to use a health-only search engine () to bring forward recent reports, articles, and sites dealing with "patient advocacy", again thinking "why re-invent the wheel?". The search posted with Paula's help currently returns something like 113 of these.
Stan