Todd, thank you for resurrecting this very important issue. I'm sure everyone on this thread remembers how close all these national orgs came to uniting several years back, until the talks collapsed in the 11th hour, for reasons we as patients can only surmise.

The fact that these national orgs are labeled not-for-profit does not mean they are not businesses. They are in the business of amassing funds to support programs and services that improve the quality of life for PWP and their families and research that seeks improved treatments and a cure. As with any business, some orgs do their job more effectively and efficiently than others. This is my own common sense conclusion, not a hint that I have any knowledge of any of the orgs doing anything they shouldn't be doing.

Obviously, as a PWP, I am troubled by how much money I imagine is going to duplication of services. I also have this sense that the way our system functions, the national orgs have to serve many different masters (drug companies, government, patients, etc.), often with competing interests. Each of these "masters" is going to get the short end of the stick at one time or another.

Carey, I too have mulled the idea of having patient advocates "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." This can never happen, however, because ultimately the patients will lose if we go public with this sort of info. It will remain "a dirty little secret" because if we question how the orgs are using the funds they raise, big donors will be less likely to contribute, and then where will we be? We are between a rock and a hard place, just as we are when we have to choose a treatment course. Our lives and millions of others hang in the balance.

Sheryl