[pegleg]

Jean - you are kidding me that some people got upset about your tulip stuff! GRRR!

and Paula, I do a lot with PD advocacy but DO NOT consider myself a brown-noser (I looked in the mirror this morning - no sign) lol.

Everett - I don't think going with "the one who would most support YOPD" is the best way. That would fracture us even more. I think there is surely ONE group that could offer support for PWP no matter what their age. Neither would be wise for the majority of the board of directors be PWP. ; I'm afraid nothing would get done. And honestly, caregivers have much to contribute to our needs.

A few years back there WAS an effort to merge the PDF (New York) and the NPF (Florida) into one big org. That would have made one powerful group who would be able to tackle about anything. But alas, it fell by the wayside to politics.

But seriously, everette has some good strategies - would it be possible for a small group of PWP's to initiate change at that level?

Peg

[reverett123]

How about an independent board of PWP who rate the organizations based on defined criteria and publicize the results annually and to the hilt? Maybe work in a sliding scale to recognize and encourage the process of change. And do it on a curve so that some group is always at 100% so that we don't alienate all of them.

Some criteria- Money raised. Overhead. Amnt to research. Ratio of the two. Some sort of innovation score. Pick the biggest venue each year and hold a press conference to announce the winner. Release the list and let the media figure out the losers.

[paula_w]

Actually, there is a central event, Shake Rattle and Roll in Peoria next month. It's a fundraiser, and the researcher, Dr. Craig Cady, is very open to listening about new ways to collaborate.

It raises him approx 10+ k a year [someone holler if i am wrong] and he could use a lot more help, not always in terms of money, to move faster. With a group of open minded attendees from around the table, lots of things could be discussed.

Joan Snyder assures that the finest bands around are playing - it's casual and festive and no one has preconceived notions.

I've been giving this a lot of thought and will seek sponsorship for it.

so there is that wave length....

paula

haha Peg i'm editing to point out that i think along the line you became a brownnosee, not a brownnoser...lol....just kidding of course. That's the atmosphere I see tho....and i'm ready to move beyond.

[indigogo]

Originally Posted by reverett123

How about an independent board of PWP who rate the organizations based on defined criteria and publicize the results annually and to the hilt? Maybe work in a sliding scale to recognize and encourage the process of change. And do it on a curve so that some group is always at 100% so that we don't alienate all of them.

Some criteria- Money raised. Overhead. Amnt to research. Ratio of the two. Some sort of innovation score. Pick the biggest venue each year and hold a press conference to announce the winner. Release the list and let the media figure out the losers.

Rick - I've been thinking along these lines; I think we need an independent patient advisory board; one way to start is an alliance of patients who are serving on org boards now, combined with some who aren't. That way, the orgs could be informed. I serve on the PDF patient advisory board, and feel strongly that I represent all patients that can't be there with me.

We've had very frank conversations about org fractionalization with PDF; they acknowlege it, tried to fix it a few years ago (as Peg stated above), but don't feel able to fix it now, or want to put energy into fixing it. There seems to be some collaboration in the offing about some research dollars, and the PDF does spend time thinking about whether or not they are duplicating efforts done by the other orgs when considering new initiatives.

It's a tough problem; I don't think that most of the orgs know or think of the level of patient frustration that exists.

[PDengineer]

Todd,
That was great... gave me chill bumps.

We have got to demand more than science as usual. The same old way of doing things just doesnt produce results.

See ya in Atlanta!

[jeanb]

Carey,

I like your idea about an independent patient advisory board!

quote from Carey: "I've been thinking along these lines; I think we need an independent patient advisory board; one way to start is an alliance of patients who are serving on org boards now, combined with some who aren't. That way, the orgs could be informed. I serve on the PDF patient advisory board, and feel strongly that I represent all patients that can't be there with me."

[ZucchiniFlower]

They have a web site, too:

http://www.standup2cancer.org/

They're asking for small donations, like $5. Katie Couric was on The View speaking about it.

We need a site like that, one that accepts PayPal. I won't give my credit card to anyone online, if I can help it.

[paula_w]

Carey,

I like your idea. Everything I've ever been involved in through organization of any kind takes longer tho and this is the obstacle we always will face. Which isn't to say we don't need any organization, but as a friend said earlier tonight - you can make contacts and get to know people in the right places - forever. Allow yourself [rhetorical] some appreciation for what you've done, then move on and accomplish the real mission. which is new territory for patients.

If we wait for that magical invitation to the "table", I'm afraid we wait in vain. Its almost rhetorical. We need patients with money to form our own tables. The orgs should help.

We've been focusing on reputations. We need a list of those who have produced tangible results.

two more cents
paula

[indigogo]

Paula - I agree a new org is the last thing we need. But we do need a way to capture the power and independence of the patient voice.

It shouldn't cost a lot of money; we can do it on the internet. We should not take any money from the orgs or wait or beg for their help; it needs to be independent.

We should look at what the orgs do in total: the good and the bad. Maybe put together a report on what each org does; the overlap; the original stuff.

These organizations are there to serve Parkinson's. The patient is not always put first. The orgs are first beholden to their boards and to their funders; the patients come next. This does not mean that the orgs are bad; this is just the reality of organizations. If the boards are not happy, if they can't get funding, there will be no more organization.

The easiest thing to raise money for is research. With so many foundations courting money, it seems that the pool of cash must be splintered. Wouldn't it be better to have it all in one place? More coordinated; more collaborative?

And there needs to be more attention paid to the quality of life of those living today with PD. More emphasis on better care.

The orgs are doing a lot of good things for patients. But at what point does the presence of so many begin to stand in the way of real progress being made?

We need an unfiltered, independent platform for patients; the organizations shouldn't be afraid to hear what we have to say. The status quo is comfortable; they do not want to rock their collective boat!

[jeanb]

It's incredible how powerful and influential a grassroots effort can become. I stumbled across the term "e-advocacy" the other day. The power of the internet - using web pages and blogs and boards and email - is amazing. (And who knows what other tools/methods are out there that we haven't stumbled across?)

We could accomplish a lot. Margaret Mead's quote is right on...