[chasmo]

my fantasy is to surround the capital with Parkies, holding hands, with luck it would rain. We could have people with loud-hailers admonishing the cops not to use Tasers because many have DBS's and the shock could fry their brain!! The possibilities are endless!!
It would certainly put us in the limelight.

Charlie

[paula_w]

IF we act up, it probably needs to be with other illnesses and conditions, who are going through the same thing anyway. pD does not have the numbers that the Aids movement had, or cancer or alzheimers. Many pwp don't know they have it, remain anonymous for many reasons, etc etc.....we are a relatively small population. Not enough to act up in numbers. But we could become very creative with You TUbe and a website. Peg, can you start designing political cartoons - they will be needed. Anyone else do cartoons? i envision blog, debate columns, guest columns, and video interviews.

Carey and i discussed doing an agitator /idealist column on a regular basis.

Let's kick up some dust....patient dust. The kind that gets in your eyes and burns......I'm not in the business of pushing clinical trials just for the sake of them. They need to show the benefit to all - that's a bill or a reg that is changing somewhere isn't it? i'll check tomorrow - visited with a brother that i hadn't seen in way too long today. As usual, we just picked up where we left off.

Reminiscing - I do a lot of that right now. It's rejuvenating to do it, put it away, and move forward.

i have made a resolution - no more guilt [unless i deserve it]. i'm finishing this battle as me, not as anyone who has to please someone else, because in being me, i will naturally help someone else. i know who i am ....and where i belong.

I am proposing funding be sought for visiting and filming research for online viewing of what all investigators in labs and trials are actually doing -a must before considering supporting a trial through recruiting. We could compose our own list of researchers in need of help and willing to collaborate. Then we can try to match them with potential partners. I see a new database being needed, or fields added to the pdpipeline database.

Uber patient may have to be approached, along with Kinetics Foundation. They still don't realize we deserve to be funded for innovation beyond speaking at conferences. We need to prove it to them. That means resources and unity.


paula

[jeanb]

We'll need to brainstorm and come up with a list of short-term and long-term goals.

Once we have some goals, then list our resources (or lack of) and decide how best we can accomplish our goals. Resources could include such things as:

• funding (or lack of funding)
• time (to accomplish tasks)
• skillsets
• volunteers
• critical tasks that we must pay for (?)

In starting a grassroots campaign, there are many things that can be done for little or no cost.

• Set up a yahoo group (accomplished, Carey)
• Buy a domain name ($7-15)
• get a web hosting package for ~$40/year
• set up a website (once we decide its purpose)
• Search and compile a list of web resources: blogs, boards, and other places to post
• Compile a list of names in order to email potential activists or advocates
• Write articles, letters, board messages, emails
• Respond ...

Anyway - just some initial thoughts to add to the thread.

Lots to think about. But I firmly believe ... a small group of thoughtful, committed citizens CAN change the world...

Now time for bed!

[Stitcher]

Going back to my corner.

Shouldn't have unintentionally attempted to squelch the energy and momentum.

[jackiehc]

Originally Posted by jeanb

We'll need to brainstorm and come up with a list of short-term and long-term goals.

Once we have some goals, then list our resources (or lack of) and decide how best we can accomplish our goals. Resources could include such things as:

• funding (or lack of funding)
• time (to accomplish tasks)
• skillsets
• volunteers
• critical tasks that we must pay for (?)

In starting a grassroots campaign, there are many things that can be done for little or no cost.

• Set up a yahoo group (accomplished, Carey)
• Buy a domain name ($7-15)
• get a web hosting package for ~$40/year
• set up a website (once we decide its purpose)
• Search and compile a list of web resources: blogs, boards, and other places to post
• Compile a list of names in order to email potential activists or advocates
• Write articles, letters, board messages, emails
• Respond ...

Anyway - just some initial thoughts to add to the thread.

Lots to think about. But I firmly believe ... a small group of thoughtful, committed citizens CAN change the world...

Now time for bed!

Great ideas, Jean! You're right -- that is a good list of tasks. However, first I think we have some honing of our message to do. Is our message "Unite now, pool your money, find a cure!" Is it "Involve Parkies at all stages of decisionmaking?" Is it "WE want to decide what the missions of PD orgs should be?" I see many possibilities, all of them noble.

About 13 years ago, I attended an organizer training at which a diverse group of 40 enviro activists were asked to answer these questions individually:
1) What do we want?
2) Who can give it to us?
3) Who are our allies?
4) Who is standing in our way?
5) What do we need to do to get what we want (strategies/objectives)?
That was hard enough for each person to do for his or her work. Then we were asked to put them ALL TOGETHER.

I feel like we in the grassroots PD community need to go through a similar exercise. It feels to me like we need a meeting of about 3 days with a good facilitator to hammer out the answers to those questions. Then I would feel ready to talk about what to put on a website, etc. But this is just how MY brain works -- doesn't mean others agree. I'm just throwing the idea out there.


Jackie

[jackiehc]

Originally Posted by paula_w

IF we act up, it probably needs to be with other illnesses and conditions, who are going through the same thing anyway. pD does not have the numbers that the Aids movement had, or cancer or alzheimers. Many pwp don't know they have it, remain anonymous for many reasons, etc etc.....we are a relatively small population. Not enough to act up in numbers. But we could become very creative with You TUbe and a website. Peg, can you start designing political cartoons - they will be needed. Anyone else do cartoons? i envision blog, debate columns, guest columns, and video interviews.

Carey and i discussed doing an agitator /idealist column on a regular basis.

Let's kick up some dust....patient dust. The kind that gets in your eyes and burns......I'm not in the business of pushing clinical trials just for the sake of them. They need to show the benefit to all - that's a bill or a reg that is changing somewhere isn't it? i'll check tomorrow - visited with a brother that i hadn't seen in way too long today. As usual, we just picked up where we left off.

Reminiscing - I do a lot of that right now. It's rejuvenating to do it, put it away, and move forward.

i have made a resolution - no more guilt [unless i deserve it]. i'm finishing this battle as me, not as anyone who has to please someone else, because in being me, i will naturally help someone else. i know who i am ....and where i belong.

I am proposing funding be sought for visiting and filming research for online viewing of what all investigators in labs and trials are actually doing -a must before considering supporting a trial through recruiting. We could compose our own list of researchers in need of help and willing to collaborate. Then we can try to match them with potential partners. I see a new database being needed, or fields added to the pdpipeline database.

Uber patient may have to be approached, along with Kinetics Foundation. They still don't realize we deserve to be funded for innovation beyond speaking at conferences. We need to prove it to them. That means resources and unity.


paula

A friend of mine is working with a media consultant to make a database of patients and scientists who are sort of an "emergency response team" to comment on studies as they are published. Right now, he's interested in environmental health topics, so I guess he'd be wanting people who could critically evaluate research papers and projects, but I think there are two important concepts for us:

1) involving patients more directly in the research discussion and fostering personal interactions btwn Parkies & researchers; and
2) involving Parkies in the media and communication of research. We're the ones with the disease! Why shouldn't reporters talk to us as well as the guy who spends all of his work hours with lab rats?

I'll shut up for awhile now.

JHC

[SherylJ]

[QUOTE=jackiehc;337455]Great ideas, Jean! You're right -- that is a good list of tasks. However, first I think we have some honing of our message to do. Is our message "Unite now, pool your money, find a cure!" Is it "Involve Parkies at all stages of decisionmaking?" Is it "WE want to decide what the missions of PD orgs should be?" I see many possibilities, all of them noble.

About 13 years ago, I attended an organizer training at which a diverse group of 40 enviro activists were asked to answer these questions individually:
1) What do we want?
2) Who can give it to us?
3) Who are our allies?
4) Who is standing in our way?

This is exactly what I meant when I said we need a business plan. I would insert a few more key questions:

4) Who is standing in our way?
5) Why do they not want us to accomplish our goals?
6) What can we offer them to accept change (What's in it for them?)
7) What do we need to do to get what we want (strategies/objectives)?

sheryl

[leonore]

This is to everyone, and a special hi to Jackie! How nice to be another "new' member with you. And hi to Carey and Peggy... I'm so glad that your always-thoughtful input has joined in with this dialogue. You, of course, are so right about proposing positive solutions, as opposed to complaining.
Your point is interesting about "advocate" versus "activist." I am pulled in both directions. My activist side wants to do something on a very large scale to address the welders' needs and support them publicly, and to take on the PD doctors who are selling the patient popoulation down the river with their research bought by the welding tools industry, in order to make millions discounting the welders' claims.

On a "tamer" level," working within the system is certainly a possibility, in so far as to creating a resource "portal" for the PD community, newly diagnosed and otherwise, in the form of a website, or a new organization that would serve specifically as an entry portal to the complicated maze of PD groups and services. That comes from the part of me that is a social worker who loves connecting others to resources. Would you mind mentioning this to folks in Atlanta if you all brainstorm?? Fortunately, and unfortunately, my family leaves for our annual 2-weeks on Cape Cod Friday night.


A coalition with a mission-what are you imagining, mission-wise? oops-have to go. Later. Leonore

Originally Posted by jackiehc

I remember when I was first diagnosed with PD 10 years ago, I could not for the life of me understand why there were so many PD organizations. At the time, I couldn't tell how they differentiated themselves. I had high hopes for the NPF-PDF merger but we all know how that turned out.

Having worked for non-profit environmental orgs for 20 years before going on disability, I take exception with some of the generalizations that some folks have made about non-profits.

1) If someone is going to work full-time (or more) on an issue, I think that they have the right to be paid for that work (but salaries don't have to be exorbitant). After all, devoting themselves to the issue means they can't do something else, and unless you are independently wealthy or somehow making it on Social Security/disability, everyone needs income. Society doesn't seem to have a problem with the notion of paying someone to be a receptionist or a communications manager or web designer if they work at IBM or Ford Motor Co. Those jobs are just as necessary and as challenging at non-profits.

If organizations have employees rather than all volunteers, there is legal oversight and recourse if someone is not doing their job. Some volunteers have a tendency to feel able to "blow off" responsbilities because they don't feel obligated to follow through.

2) If there are paid employees, there can and should be job descriptions and individuals should be chosen to suit that position. With volunteers only, you have to take what you get.

3) I don't think there can ever be a PD org comprised solely of Parkies (sorry if that term offends anyone) and care partners. Our lives are simply too chaotic for us to do it alone, and let's face it -- this is a progressive disease.

HOWEVER, I do think there is a way to improve the current situation, although I haven't quite figured out what the alternative might be.

A couple of "models" or "mindsets" to consider:
- in the disability rights movement, their motto is "Nothing about us without us." In other words, we need to be involved in organizational decisionmaking at all levels.

- a coalition with a tight mission statement might be more palatable to the orgs than another org. I am thinking of a couple of coalitions with which I've been involved (see Health Care Without Harm and the Collaborative on Health and the Environment (I can't post links because I'm new, but if you want to learn more, just Google them). These are meritocracies (those who want to do the work do it and thus become decisionmakers). I know of a couple of foundations that have been interested in funding such efforts.

= I spent many years opposing things (garbage incineration, whale hunting, etc.) I have found that it is much easier to get people on your side if you turn that opposition into a proposition (e.g., I am FOR recycling, reduction of packaging, and composting of food waste, as alternatives to burning garbage.) It's worked for me, anyway. No one thing works for everyone.

I believe that each of us needs to decide whether we are going to focus on being activists, or advocates. (My working definitions are: activists are willing to take non-violent action to change "the system" if necessary; advocates worth within the system. BOTH ARE NECESSARY. It's just a matter of deciding what you are willing to do.

Maybe this has already been suggested and I just missed it, but I'd like to propose that those of us rabblerousers who are interested in discussing this further and are also going to YOPN rendezvous in Atlanta. What do you all think?

Sorry for the lengthy posting!

Jackie

[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.

[indigogo]

Jackie / Jean - thanks for your energy!

I'm thinking out loud here, but wondering if some of the initial work you propose, Jackie - individual answers to the 5 questions - be done online and at home by as many people who want to get involved. We all have a stake. Answers to the questions can be submitted to a central location (perhaps the Yahoo group address) to be compiled.

At that, or some point, I agree, a face to face meeting is required to figure out how to take the raw material and turn it into a game plan. But perhaps the data collection can draw from a wider audience. This doesn't have to be "scientific", just a "sense of the community." Afterall, a meeting of several patient advocates with a facilitator is far from scientific - and that is how all of the work gets done now.

Determining the goal is essential. Personally, I'd like it to be more than just a declaration of intent, but also include a concrete outcome: 1. PD Community should organize more efficiently in order to accelerate a cure and expand quality of care. 2. Patients have the biggest stake in making sure (1) happens; one way is to establish an oversight/action committee comprised of patients and org representatives. Or something like that.

I have established a yahoo group to talk about this stuff, united4pd. Right now I have it set up as invitation only. If you would like to join, PM me with your email address. We can decide later if we want to go ahead and make it public.

My initial thoughts. What are everyone elses'???