Seems like the last time I went to a live PAN forum in Washington, DC, there was much discussion of this area of inquiry. Representatives of the various orgs were invited to sit in a panel together and tolerate questions from the audience of well-worn and knowledgeable advocates. A wise soul from the wave of activists before us rose and asked the head of APDA why the promises of a similar panel a few years ago had not been carried out. Anyone recall the answer? I don't, but it was a good question. About that time, NPF and PDF came very close to union--even the stationery had been changed, I heard--but the deal collapsed at the last minute over (I heard) fiefdoms and corner offices, titles and power.

For that matter, speaker after speaker, year after year, calls for consolidation and receives roomfuls of applause. My mailbox is crammed with expensive four-color "newsletters" that contain pictures of the donors (whose motives are laudable) attending gala balls and sitting next to lovely floral arrangements.

One year, at one of those formal fundraiser dinners, the people with PD were asked to stand, then we were asked to applaud our benefactors, that is, the people who paid so much to come to the event. Sitting at a table with no flowers at all, on the periphery of the room where the service was surly and slow, I nearly went ballistic--but of course I only cried later--because I had paid $500 of my own hard-earned money for the tickets for my spouse and myself. There was talk of apology to the PWPs for that gaffe, but none that I was aware of ever made its way out of the halls of power.

MJFF, on the other hand, is changing the face of medical research, showing an arcane system of peer review how to bring ideas and knowledge into the light of day, while mere croneyism is a non-factor in the awarding of grants. They are doing something really new, which makes me very much want to trust them. Their conversion from avoiding patient input to a serious listening resource for patient wisdom is more than commendable (thanks, Debby) and points to a more balanced future in research.

What to do? Talk to local support groups. Make this need real to them. Someone publish the orgs' ingathering and distribution figures. Why not? Oh yeah, years ago I was told this would make donors turn to other, less volatile, charities.

What else to do? Talk to doctors in the examining room. Oh yeah, and maybe get labeled a troublemaker??? No, but teach people how to get what they're paying for from their doctors and their charities.

The old system mostly goes on, and fear keeps it in place. Am I wrong? Oh, how I hope I am wrong. The inroads that have been made should be clearly reported and explained to people in local support groups, who may not want the experience. We need to walk a thin line between retaining people in groups and bludgeoning them with one more burden.

But I wander. I know I shouldn't post at 4:38 am, but here goes. Thanks for reading and happy Thanksgiving.

Jaye