I like these ideas Jackie. Rating the orgs isn't something I feel qualified to do, but somehow publishing the actual results that have made it to the patients, perhaps on a timeline to show the rate of progress, could be considered. Just the facts, no judgement.

To the orgs reading these comments, I would strongly keep in mind that this comes, not from the smiling faces you see with all the energy and good will pwps can muster up at conferences, but from the people sitting at home, many alone, who can't make it off the chair right now without crawling or suffering pain. These comments are coming from people who can barely type, whose shoulders are locked, whose mouths are caved in, who can't eat and have to worry about providing themselves with proper nutrition when they don't want to walk to the kitchen. From those who are lonely, who have nightmares, and then read about medical researchers paid to get industry off the hook when they make mistakes. From those who can't afford their meds. And sometimes we do wonder who the orgs really serve. Just as we wonder who anyone, with large amounts of money, really serve when we are not seeing results.

I see the suggestions leaning toward looking at what orgs have done to diectly benefit patients. This can be a positive thing, but even the smell of patronizing [oops wrong word we have no smell] - let's say even a hint - will be detected by the more advanced pwps. We make every attempt not to look desperate - but nevertheless - the needs are numerous and BS detectors are fine tuned. Throw in paranoia and control freaks and it becomes apparent why this thread is overdue and should be productive - if there are no me's, just we's.

paula