[Jaye]

I wrote the following paragraphs some time during the night and just woke up looking at it, so please forgive the lack of flow. Carey, much information about the orgs is right under our noses all over the internet. I've never minded compiling medical information for fellow PWPs with less internet experience than I have, nor is it necessarily bad for to know one's way around the philanthropic scene. But you have brought some things into focus for me.

I don't want to start one more org, but I have long espoused the publication of certain information about all organizations. I am the first to admit that I'm politically inept, more of an agitator, but nothing seems to have been improved by sitting on the information to keep peace in the family or to avoid scaring away potential donors. Not doing anything to hurt the family works for crime syndicates and racketeers, too, but they're still big thugs preying on little, frightened people. Maybe we need to get clearer on who's in the family and muster the courage to say so.

I don't know the answer to your question, Todd, but some of it has to do with the length of time we're sick. No, I don't think we have nasty personalities and can't get along. But think of this: the orgs seem primed to serve old people sitting in wheelchairs and drooling. Lots of parties and cheerfulness were the patient interface in the not-too-distant past. Now we have better treatments, and we're around for even longer, but the internet has brought us together and the orgs don't seem to know that yet. I'm sure they don't know how MAD we are (speaking for myself). So there's some hope.

We're sick for so long that advocates are in danger of corruption by the perks and privileges they have acquired, and they are in danger of despair that makes them forget that a cure or better treatment will really come.
They are then at peril for that first tweak of corruption, the staking out of turf. The more prominent they get--instead of using their contacts to bring in more PWPs to swell ranks--the danger is that they could begin guarding their information to maintain their own importance forgetting that we're in this to get well, not to get recognized. (Of course I'm basing my opinions here on theories and rumors; I don't personally know anyone with these negative characteristics.) When the time comes that an advocate's energy and cognition are waning, they should be passing along their knowledge to an eager new wave of advocates, and like Moses, be glad that "the children of Israel" want to "prophesy" (tell i like it is).. The best are grooming their replacements right from the start. So there are some of the dangers, not that I've named them astutely. I'm on the wane, for sure. I like it here behind the scenes, and I apologize if I've mis-analyzed the situation.

Another thought: if some money is scared away, other money will be attracted. Peg, yes, it takes money to make money, but nobody wanted to invest the 30 pieces of silver. Just something to think about.

There should be focus groups of patients everywhere. OSHU PD Center uses them. I don't know much more about them than that.

There should be a guide to Centers of Excellence with patient analysis of their effectiveness. Perhaps a page on Angie's List?

There should be an Office of Cures at NIH.

And I'm grumpy from feeling the effects of drug withdrawal on my third day without KW6002--after the halted trials of another beneficial drug.

Jaye

And no, Peg, you are not out on a limb alone. There are a lot of ideas here, and all we have to do at this minute is to accept the diversity of ideas and respect the people who wrote them. Next we hope for creative synthesis...

[indigogo]

Peggy - I don't think you are out on a limb. I think we have to cooperate with all of the current players. The question is how do we play / how do we leverage our strength as a player?

No one has spoken to this part of my above post:

"I think the value of some sort of patient panel lies in its ability to articulate the needs of the orgs most important constituency. Our voice now is lost among all of the other power players. Although patient frustration is a negative emotion, it is what is motivating us to speak out. The result we seek, though, is positive action on all fronts from those who are already mobilized in our service - the organizations. I think it would be generally positive if patients who care about this and who are in a position to influence, start to have a conversation about what is possible"

In other words, would we have more power if we were consolidated along with serving as individuals holding positions on various advisory boards? We want the pharma investment, - how do we influence how the money gets spent? Right now it's spent on our behalf without our input.

Speaking to Todd's original question: what can the patients do to change the org culture from "me" to "we"?

One thing is becoming clear from the above - as individual patients, we are intimidated into compliance by the status quo. Is that really how it should be?

[reverett123]

It might be interesting to look at the experience of the gay community and their struggle to get society to deal with AIDS. A place to begin is Wikipedia's entry on the book "And the Band Played On." One thing they learned is that being nice gets you a good eulogy.

Organizations exist first to perpetuate themselves. Allowing patients within the walls is not high on their list. This is doubly so when staff runs the show as is often the case.

Don't be afraid to embarrass someone so long as you are simultaneously praising someone else.

Here is a good site that rates non-profits-
http://www.charitynavigator.org/inde...search.results

[paula_w]

Peg,

I do not think you are alone in saying we must work with pharmas. It's a matter of where the dollars go. Much of it is not being spent on R & D. We aren't seeing results. I do understand your point about collaboration.

paula

Originally Posted by pegleg

I understand where you are coming from. But laws and rules are a part of everything we do - EVERYTHING! I just feel that working "with" big pharma is more conducive to getting where we want to go t han working against them. (And yes, there are times we need to oslap hands publicly).

What if every time a trial was called off, our grassroots group had a team that would go in and inspect and investigate as to whether or not there was another way - and would make recommendations? I'm thiinking big, which we would have to build u p to - one step at a time.

is anyone following me or am I out on a limb alone?
Peg

[jeanb]

Peg what a terrific idea.

Peg said: "What if every time a trial was called off, our grassroots group had a team that would go in and inspect and investigate as to whether or not there was another way - and would make recommendations? I'm thinking big, which we would have to build up to - one step at a time."

There are so many thoughtful ideas in this thread. But does anyone here have the energy or the time to actually move forward on these ideas? (I know people have the talents and knowledge and skills)

[Jaye]

(Jean, my feeling is that we are rolling on idea-generation and might be jumping too soon if we attempt closure. Allowing time for synthesis--better ideas coming from the early suggestions--was an important step in the design process when I was learning problem-solving in architecture school. Just my own view.)

(Jaye)

(Oh yeah, and this thread was only started at 4:30 yesterday afternoon. Some people are still employed--although it's really really hard for me to remember what that's like, or live on some other continent, or need to repair their computers today, or.... )

[indigogo]

Jean - you are so right re:

"There are so many thoughtful ideas in this thread. But does anyone here have the energy or the time to actually move forward on these ideas? (I know people have the talents and knowledge and skills)"

my answer is, "no, I don't have the energy. But is it time for me to do it anyway?"

At some point aren't "they" counting on our lack of energy to remain divided and mute?

When I was a very small girl, my mother used to sing the jingle from a product called "Carey Salt." It was "Carey, carey, carey, you're so revolutionary." I guess my agitator-idealist side is showing!

[jeanb]

Jaye - good point - to let it evolve - I can accept that.

I just blurted out (in print) what I was thinking....

Carey - you go girl!!

[SherylJ]

Peggy, of course we have to work with all stakeholders, but the time has come for the balance of power to shift. Patients are the customers of the orgs and pharmas and the customer's needs should always come first if a business wants to be successful.

Off to Iowa. will try checking in tonight from the hotel.

sheryl

[jeanb]

Yesterday I spoke about Parkinson's disease to a Kineseology (sp?) class at Arizona State.

As part of my presentation, I mentioned promising treatments that had ultimately failed in clinical trials:

• GDNF
• SPHERAMINE
• KW6002

These were treatments that I KNEW had worked for some pwp, but had still ultimately failed in the trials. I ultimately broke down and wept as the class asked me questions.

Some time ago I had given up on there being a cure in my lifetime, but now I am rapidly losing hope for getting new treatments.

I write this because the topic and discussion are important to us and all pwp.

We can make a difference.