[paula_w]

Rick,

I imagine some will race to answer this one or else run the other way. The orgs are caught in the middle of a changing world where patients were largely excluded. Their boards can tie their hands. Once again, it depends on who the group is who is appealing for help - if it's not a popular one, the group will be ignored.

Just think on this a moment - none of the PD orgs acknowledge Monkeys in the Middle - who are they afraid of offending?

The orgs are changing and becoming more patient oriented. But you can see by what they ask of patients that they don't completely understand the illness. And gobs of their money also comes from pharmas and biotechs.

paula

[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

[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."

[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...

[leonore]

Carey, I think this is an amazing idea. I'd love to be part of one.

What has saddened me terribly, along with a small group of compatriots, in NY, is the absence of interest in an ongoing patient advisory board in NY City's new NYU/JCC PD Wellness Center. I want to offer, below, an example of how PWP-input gets "wasted" through short-sighted planning by otherwise good people.
My visionary but way over-extended PD doc and his colleague, both of whom I admire enormously, invited about 4 of us with PD, three of us clinical social workers, all retired and hungering for a role, and all in the arts, to serve on a committee two years ago, of neurologists and social workers pulled together to design a new PD Center with a "wellness" model. We were part of lengthy strategy meetings, involved in e-mails suggesting a name for program, etc.

The plan included a Sunday Creativity and Education quarterly series. We met at least three times at NYU Medical Center in 2006-7, incredibly productively, and then my doctor came up with the idea of partnering with the Jewish Community Center, offering classes for folks with PD at their gorgeous facility. Suddenly, the JCC Board and the NYU Medical Center Board became higher-up decision-makers, (the beginning of the end for roles for us patient activists.)
A social worker was hired to run the center. and NPF trained JCC teachers to teach yoga, TAi Chi, dance, etc. to Parkies. They honored me by asking me to facilitate a kick-off workshop in December about the PD artist and the creative process, reading my own poems, and introducing the artistic work and conversation with others from that small original planning group; including a PD photographer, and a PD choreographer, (our very own Fiona.) All very exciting. We got an incredible response to morning and afternoon sessions from so many folks with PD who attended.
Then, once Center was born, and classes begun, over the course of 7 months, they held a second, third, and fourth Sunday event, and none of the five of us were ever called in to continue our role as patient advisors on content of Sunday series, or anything else. We were praised as audience members by program directors at each event for our part in creating program, but that was it.
We all were perplexed by this, and were finally told that it was never their intention to formalize our participation in the Center as patient-advisors, nor do they intend to create such a panel, but invited us to a "Town Meeting" to offer input. Secretly, I was told that people representing those with advanced PD felt that those of us with early-onset gave too "glamorous" a face to the Center. (puhhlease!) Thus, since too many patient populations were asking to be part of the Center, including none was the obvious solution!??!!!!

We have been flabbergasted by this short-sightedness, and troubled to no end. My doctor says that it is sort of bureaucratically "owned" by the Boards of both halves of partnership, and feels terrible that we are not integral to the organization. This is, to me, a classic example of how patient input gets "disappeared" in a waste of resources. He fully agreed that they had made a bad mistake in not creating a formalized role for us, but said that it was out of his hands, and it is obvious that he no longer has much say. Bless his heart, though, in that he uses my PD poems to train his neurology students, saying what I say in my poems is far more evocative and eloquent than textbooks. The truth is that he has a long-term "dream" to have me "curate" a literary "textbook" of writings by those with PD, (how cool is that??!) beginning with a blog, to eventuallly find its way into sponsorship by his hospital.
Well, I dearly love him, but he'll never find the time, and I'd rather find my own publisher for the writings I intend to collect. It is, indeed, a superb idea.

All of this is simply my way of saying: I, too, am tired of begging to be invited to sit at the larger PD-run organizational tables. And...I'd LOVE to be part of something constructive formed by PWP's.
I just closed my private therapy practice of 24 years because of increasing "off" stretches which are unpredictable, miss my clients, who miss me back, feel really sad, and deeply crave using my creative powers for the greater good. Sorry this was so long, folks.
Leonore

Originally Posted by indigogo

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.