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...