I think in a couple of pared-down initial conversations, we could define the perspective and things we want to address, and some action that we want to take. None of us have time for endless wallowing in anything.

In Canada and I imagine the United States as well the immediate talk in government is the health situation in both of our countries. We are being bombarded by news of insurance and the availability of health procedures as to being immediate and postponed by waiting lists etc etc and of course the costs of personal and governmental health plans.

When MJF is here in Burnaby where he grew up there is a world-wind of information put out in the press but i have noticed it is Michael first and Parkinson's a close second, maybe third even as the event he is here for is there as well. But when he is gone we only hear about Parkinson's when they are asking for participation in some event to raise monies. Most of these events require money to participate and so IMHO people only go because he is here or they have a personal interest in Parkinson's.

Good or bad I don't know but I do know that there are not many people who are not knowledgeable who really want to know. I have been called a fanatic, i only see the bad side of life or the one that really gets me, you don't have parkinson's so what is your motive? Do I really have to have Parkinson's to care about getting it off the map of life?

NO

A new group that is going to form one of these days and takes into consideration the general public and the myriad of neurological diseases and conditions out there that are wanting for publicity and funding is not going to work unless they understand that it is numbers and numbers alone that can make it a winning entity.

The one positive that came out of the Petition for Stem Cell Research that we did was the FACT that a great many of these associated and some totally unrelated diseases came out to help us.

There are millions of people out in this land of the web. and you can see it in the reporting done this very day about Iran, that would utilize the medium for the benefit of both themselves and others.

The world is not filled with little rooms where the key to entry is you must have this or that disease to get it. Nor putting such a site into the hands of a few, dedicated or not, to run it is going to work.

Haven't we all had enough of the orgs and assoc doing just that? Why not just a monster page with each and every page free to anyone who wants to contribute. Let the people be once again have freedom of speech?

Volunteers could be utilized as needed. When hundreds of thousands gather there has to be one or two out there who would volunteer their services.

There would be no events nor asking for monies just gathering of that which some politicians need and fear the most

VOTES

So then how do you VOTE

So ok. I'll put my cards on the table.

For me this advocacy group would be Parkinson's patients (or other neuro diseases) who want to communicate to the world about their situation, both to create awareness to help themselves, and to help others. It would serve as a watchdog group, using patients' authentic experiences as information to uncover hidden aspects of the medical treatment world, and also encourage thinking outside the box for new solutions to our situation. Its core stance would be that the status quo has not been serving us. We recognize ourselves as intelligent, informed, and imaginative patients who can improve our lot through a critical consciousness that doesn't need to and won't capitulate to any institution, medical business entity, or organization.

The patients in this group would be people who have taken the initiative to empower themselves, and recognize and utilize many sources of information, not just what their doctors tell them. They recognize that they are the only ones who get to decide what happens to their bodies. They seek out novel, under-researched, or alternative treatments, or are willing to experiment - through contributing to the SPIT program/genetic research, or participating in clinical trials, or being an informal White Rat, or trying "unapproved" treatments such as ear implants, or going to live with the Indians in tipis - whatever that individual is comfortable with for his/her own body. There would be no pressure within the group for anyone to try, use, or participate in any kind of treatment or research that that person doesn't believe in.

We would find ways to encourage people to think for themselves, to imagine the positive, to feel confident about asking questions of anyone, to gain skill in seeking out and evaluating information from diverse sources, to believe in the possibility of improved health.

I We would make inquiries about financial conflict of interest in our world, and make public our findings, names and numbers. Prominently.

II We would publicize to a greater degree what happened in the Amgen trial, get an accurate read on where things are at now with that, and let people know that it's likely we will never get a "cure" of any kind unless it generates huge sums of money for some shareholders in perpetuity. If it is warranted, we will find a way to put pressure on Amgen to release the rights.

III We would seek out hidden information and research that has remained invisible, such as the research that shows levodopa therapy to be neurotoxic, and ask that stuff like that be verified and made public. This would include possible treatments that have been invisible because they don't stand a chance of making anybody filthy rich.

IV We would start an educational campaign for nursing and hospital staffs so that people with PD need not suffer from ignorant treatment there.

V We would confront the pharmaceutical companies and/or doctors about the safety issues surrounding combining, reducing, or changing medications. We would encourage patients to question why they have been prescribed something, and exactly what are the implications of taking that drug.

VI We would push for more accurate diagnostic procedures.

VII We would push for the inclusion and recognition of patient voices in every aspect of our treatment world.

VIII We would consider ways to encourage the implementation of team approaches to treating Parkinson's, recognizing that food, air, movement, digestion, releasing stress, nature, music, dancing, hilarious movies, companionship, and love are what will make our world and us recover.

Our first project would be to find one collectively-taken action that would address each of the first seven enumerated items. We would set a timeline of 3 months for these first seven actions to be put in place. People would have one week from today to gather ideas, then we would present them to each other collectively and on Friday 26 June, we would vote on which seven we will implement in the first Action Round. The First Action Round will go from July 1 until October 1.



Ok. Your turn. And while critiques are appreciated, concrete alternative structures, or specific ways this could be improved are worth more.

sounds like fun!

I will try to use Fiona's initial pass as a starting point but will combine or condense where possible-

1- We will seek to be a watchdog for the PD community in the following areas: conflicts of interest such as Dr. Olanow and excessive influence by Big Pharma upon research decisions such as Amgen. We will do this by compiling information from media sources, post the data online, and draw attention to it as appropriate. Keeping in mind that an institution does not necessarily know what its individuals have been up to, we will provide an opportunity for them to comment.

2- We will compile and maintain a database of promising and cost-effective potential treatments that have appeared briefly in the literature only to disappear without further investigation.

3- We will promote the concept of urgency and research triage and its relationship to the methods currently employed. Funding priorities should emphasize those things which might bear fruit quickly and the FDA should step back.

4- We will educate the newly diagnosed via an online handbook making them aware of these issues.

5- A similar handbook for hospital staff will be prepared.

6- We will address our concerns about the overuse of questionable drug cocktails....etc

will help as needed, feeling amazingly better and starting to wonder if i was starving to death, anorexia. but this is for more energetc peopke than me. i am goimg to post in the acceleraqtor thread about something that must be resovled. if it isn't i will out of necessity let u figure it all out without my interferrence but i'll be rootin for you and engaged in something else. no not a book, just good manners and training advocates.

sounds like a good plan. doesn't sound like you want comments , so do it your way, hope you consult sometimes with me simply because it could save you time, time is not neutral.. your schedule amd timelines are great,
youvhave resources going unused. can this change/
i seee two wikis./ and no support for either. one is viewed by the powerful people . we are the powerful people.
ok off to do somethiong nescessary. then i'm ready to watch other people in action. perhaps with my hands tied and tape over my mouth, LOL. i'm the good guy. nnot about everything , but about this. read the postt and see if silence follows. that will determine my n ext proect and goal which i will complete, i always do.

ln the meantime,,try tO meet your deadllines, use what you have, don't reinvent every wheel, and move it like an obama czar only with transparency.\expect what you ask for.
all these things i offer to keep you aiming for, if you ask for or need.
and a little humor please....
kc 'you gave me a good chuckle

best
paula

Fiona,
Thankyou for your clarity and purpose. Would love to participate in more than talk! Feels as though the time could be right.
Lindy

People, I know this is a really bad moment, but I have to take a break from this board for a little while. It's not you guys, but I need to take care of myself a bit. Rick, I love your streamlining. Carry on. I'll be back as soon as I can. Love to you all, very much,
Fiona

The June 2 Washington Post featured an article by Jackie Christensen, PAN Minnesota State Coordinator and a member of the Coordinating Committee for the Collaborative on Health and the Environment (CHE) where she is also co-coordinator of the Parkinson's Working Group.

Jackie's article was about the literal and figurative strength of the Parkinson's patient's voice; at the end of the article she was identified as a founding member of a new PD patient organization, Allied Parkinson's Health Activists (ALPHA).

That group is real and it is in the process of forming and being incorporated. A mission statement and group/governance structure are being finalized. One model being looked at is CHE, the organization that Jackie belongs to, with working groups on various subjects of importance to patients, including opinion papers and research articles. It will also be a place to network around community health resources including a speakers bureau.

The founding of ALPHA began in informal conversations at this year's PAN forum in April; familiar names include Greg & AJ Wasson, Jackie Christensen, Leonore Gordon, Linda Herman, Carolyn Stephenson, John Ball, Kathleen Russell, and Carey Christensen. Bill Bell of the Northwest Parkinson's Foundation is serving as mentor and facilitator, and will make the NWPF's non profit status available to house potential grants. The group has not grown beyond those who attended PAN this year.

ALPHA’s goal is to provide a patient-activist perspective; the organization will be open to those who would like to participate in any of the working groups or contribute to the resource network. Another goal is to keep the structure flexible so that it can ebb and flow with the abilities of patients and the issues that need to be addressed in a timely fashion. It is intended to represent patients with a proactive, independent, responsible, knowledgeable, professional voice, and will not be simply reactive to the other national organizations, pharma, or other players.

I am really jumping ahead on this thing; I didn't want to say anything until the initial infrastructure was completed. There is a desire, like the one expressed by Fiona in the opening post to this thread, to keep the working group small and private, and that's how it has evolved.

But being private at this point doesn’t mean being secret. Especially among patients who are looking for a place to put their enthusiasm for activism.

The national orgs are already aware of this effort (from the Washington Post article); we have a very sketchy website with preliminary language here: http://www.alphapd.org

What ALPHA finally announces might not be what the posters in this thread are seeking; but it will be one option. Soon.

Keep the faith and keep in touch, Fiona.

Thanks for this, Carey. And I love your quotation under your signature. To the rest of you with your postings-so glad that there are so many of us feeling so adamantly the need for a patient voice, and Rick, I'm with you 100% on addressing Olanow's despicable ethics violations from within patient community. Sorry I haven't done Neurotalk in so long, but I've had to prioritize my computer time, and a bunch of things had to go. warmly, Leonore