new kind of patient advocacy group forming?
 

Hi everyone,
Times change. When I was first diagnosed, they didn't think there could be any kind of regeneration possible in the brain. Not to belittle efforts made in the past, but it seems like discussions of late have revealed quite a few people wanting and ready for something different than what we have had already. Should we do this?

How should we go about it? Start with a core group and invite others down the line? Should all those interested retire to some private form of group communication so that we can hammer out our ideas or figure out what we want to do before we go public with it?

What do you think?

look at what you stumble into just browsing here tonight...energy?.

Fiona, will get back to you but my first thought is thank you for asking.

paula

[Fiona,
thanks/
"How should we go about it? Start with a core group and invite others down the line? Should all those interested retire to some private form of group communication so that we can hammer out our ideas or figure out what we want to do before we go public with it?

YES we should go on, and thinking about the ways to be productive. more later, just took mirapex.........

Girija

I vote for the core group approach. Once we have our act together we can trot it out on the stage to see how the crowd reacts, but right now we need to focus on our view of the problem.

I agree with Rick. The best way is to form a core group or "committee" that can get things organized first. The committee members could even setup a charter so that the group can remain focused on goals rather than run ad hoc, which happens many times a group has been created. This not to say that a brain-storming session isn't out of the scene, nor are future changes not allowed once the charter is setup.

This is something I learned when working with my online classes. I had to participate with teams during each class. We were given projects that we had to complete as a group. Some members participated more than others, and some seemed to take over the group to run it themselves.

With members spread worldwide, this can become a hassle for communication. One of the things I did learn from the online experience is that having a single meeting place, in my classroom it was the online team folder, to hold virtual meetings, and exchange ideas.
The reason for the online meeting place was so no one was left out of the idea process.

Once the intial group is setup, then you can present it to the public. With your framework in place, you'll have something to hold on to and build on frome the base.

I hope this helps.

John

IMHO Sort of Like ...
 

Sort of Like ...

Sort of like a national PD organization restricting access for patients untill they want that access to be used on their terms.

Every bit of fragmentation whether through too many national orgs, too many individual web sites, too many groups, too many back rooms causes a weakening of the community no matter how well intentioned.....

Say it in public.

take care ,,, ken

I hate to sound defeatist, but........
 

We've "been there, done that"
we'll talk it to death.
We need to DO it, NOT talk about it.

I agree. Back room. Aliases. Forged documents. The works.

start with some action
 

just a suggestion and i think i'm too tired for anything but an occasional suggestion. could you organize 'events' instead of an org that forms but never quite gets to the events? not to say that this new one would be that way. but an event might attract people and maybe even from there you could organize more?

2 cents.
paula

Um, I don't know how much energy any of us have really. I was just suggesting it because recent discussions seemed to indicate a vacuum of some kind.

I'm for doing things too, but even in recent threads there have been different ideas of what to do. My thought would be to focus on one or two or three definable projects, and with a clear and do-able plan of action.

I also suggested that we talk not in public in our initial discussions - although any one who wanted to contribute could - well, we still do have freedom of association, at least in the US, and if we're not being funded by any entity, we have a right to have any conversation we want to privately. The PD community is not all on the same page. Maybe our group could accomodate every possible point of view, but I don't know that yet.

I also think I don't want to have these initial discussions with endless shadowy lurkers right at the beginning...

those are my initial responses, more to come.

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.

Someday...........Be it now........Please
 

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

My Agenda
 

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'll have a go at it....
 

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

you have to get it right
 

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

Alpha
 

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.

alpha
 

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

Just realized i'm not sure....is Alpha and the group fiona is gathering online one and the same?

paula

No, I did not hear about Alpha until Carey told me a couple of days ago. I just suggested a new advocacy group because the intense conversation of the global accelerators thread suggested there was much energy that needs to be expressed in more than talk. I also didn't suggest a new group because I necessarily have the energy to lead it - while I suppose this is the same with many people here, right now taking care of myself and hanging on to my life is taking a lot of energy, and just focus and attention.

Nevertheless, I offered the specific model and proposed project plan I did in response to the posts calling for complete transparency and more focused action than talk. Now I wish those posters who requested that would speak up and contribute to the conversation ( as they can - I know we are differently able at different times) on that level, concrete ideas, or in the name of visibility, at least response to the ones that I struggled to put out there.

ok thanks fiona, i know what you mean. and when off, i say 'i volunteered for what???"

paula

haven't read all but
 

have read to the point at which some recommend no committee or core group. personally, i wonder if such an approach is tenable. clearly not possible to include the entire pd community directly as i doubt every pwp reads this message board.

so, suggestion:

make committee membership open to anyone who wants to commit by X date.

rosie

Hi,
I am always very interested in advocacy groups. I am following this thread with interest. I haven't much to add at this point, as I am "new" to this specific forum/topic. I'll continue to follow this with great interest...carefully learning from others here. Thank you~:)

PD advocates and new blood
 

Fiona,

I was luckily out of town when the "accelerator" thread was hot but was referred to it by my colleague and friend Paula, who also advised me to stay away when the 'pipelines' qualifications were being discussed, and MJFF was the object of many concerns about their incorporation of patient perspectives. As founder and one of the leaders of the Pipeline project in 2002, I am associated most closely with the PPP name, but by no means am I the whole organization.

I dont think that we have met in person (I have a PD memory after 13 years dx), I want to share with you, as others have already done, how moved I was by your description of the "trust" issue with regard to patients. The paper that several of us wrote on "Ethics in clinical neuroscience" (see. http://www.pdpipeline.org/whatsnew/n... july 2007.pdf) raised some of the same issues about how industry, science, and regulators have earned this mistrust, but none have said it as articulately as you. I would like your permission to share your views with others that I come in contact with. For example, yesterday I was among small group of patient advocates from all disease associations invited to a listening session with the new FDA commissioner and Deputy commissioner, who are quite interested in increasing transparency in FDA processes.

As I continually scale back my activities in the face of our relentless pd companion, I am looking for people like you as well as the others who I have known many years to take up the cause. This new organization idea may be just what we as an advocacy community needs. The ALPHA 1 organization could provide a structure to incorporate the voice of the patient more broadly if the organizers, all of whom I know, would like to take such a view. Discussions with PDF about merging with the pipeline project have gone on too long, making me concerned about their commitment to empowerment of the patient perspective. I only learned about this new organization, today. I have been reluctant myself to take on the formation of a new advocacy organization, but in collaboration with the organizers who apparently going about it in a thorough way, I think I and my colleagues in the pipeline project (if they choose individually, have lots to offer, including.

1. On going collaboration with FDA to recruit and train PWP as patient consultants during design and analysis phases of clinical trials
2. Collaboration with PSG on creation of 21st century population data through practice data in EMR/PHR (electronic health records, personal health records) and interoperable data exchange standards
3. Collaboration with 30+ other disease focused voluntary health agencies devoted to increasing roles for patients in all aspects of healthcare (working group on evidence based health care -

I will be following this note up with them directly. Every time I leave town something happens, but I am catching up now. pleased to meet you.

Perry
:grouphug:

a few clarifications [cough]
 

perry,

the Alpha group is forming independently - they have a core group i think. fiona was referring to the forum, which for now appears to have decided on a book and/or poster [under consideration?] for next year's WPC. The option to update Linda's book is one possibility but whoever is in charge of the book project, as well as fiona and carey can tell you more about these endeavors. I think the pipeline will merge with pdf one of these years..lol..we are all procrastinators ....i don't think any other mergers are on the table.

hey you might want to check with the group before you offer their services sir...geez if you are going to give us away, how about somewhere tropical? lol


i agree that Fiona's writing is superb. She grasps it all and says it with honesty.

paula

alpha
 

The ALPHA (Allied Parkinson's Health Activists) founding committee is meeting in August in Minneapolis. We should have something concrete to announce shortly thereafter. The goal is to create an organization that can accommodate many projects and patients, but we want the foundation, mission, purpose, structure, etc. to be firm before we open the gates.

Hi Perry,
nice to meet you, and thank you for the support and engagement. Yes, you may mention anything I said to anyone....I will have more to say about this whole movement, as it's become, and ALPHA and PPP, etc....just need some good catch-up time.

Real soon though.
Fiona