first of all, julie i'm really glad you're going with the t-shirt idea. i think you'll do well with that, support the walk, AND get your message out. good luck with it and in your upcoming meeting with UW!
as to the other points:
the CEO makes about .40 on every $100 earned by the CFF. the Foundation itself remains one of the most efficient charities out there. "not-for-profit" does not mean, nor has it ever meant, "not-sustainable" -- these organizations have to pay their bills INCLUDING salaries for the top-notch and frankly outstanding people in charge over there. those high up in the foundation are fully committed to the cause; they're also qualified professionals with extremely expensive degrees who would, believe it or not, command even higher salaries in other sectors. whether or not you think the salary market for such jobs is out of control, it stands to reason that any major research and lobbyist group like that is going to need to pay whatever the market rate is for the job in order to get the best people. and if you think that these people weren't hand picked by the folks that started the organization, you're wrong. the founder (a CF mother) still attends many CFF events and was quite active in making the Foundation what it is today. to her great credit, i would venture to say, as i honestly can't think of another group that has made so much progress so quickly, and on a GENETIC disease no less.
i agree wholeheartedly that the CFF goes overboard telling CFers to be cautious. that said, my transplant doctor tells me never to drink water with lemon in it at a restaurant. i accept that it's HIS JOB to give me the best MEDICAL advice he can, and my job to make it work (or not) with my LIFE. so, yes, i am around other CFers more than the CFF would probably like. they actually know that since i know many of them personally. but i don't expect them to endorse it -- if they did, and i got sick, that would be irresponsible of them not to have warned me of the danger. it's a risk i take into my own hands. and i'd imagine that if joan and beth were speaking TOGETHER then no one said CFers COULDN'T be together. if they did, that would seem like a lesson in "do as i say, not as i do."
julie, i am sorry you feel wronged by the Foundation. i would suggest not writing to the CEO for an introduction, though, as generally the best way to get a response from any company or organization is to start a little lower on the totem pole. i do not, for example, write the president to get my voice heard; i write my congressperson or even a staff member.
also, and i realize i may be in a minority here, but i do think it's fine for the CFF to chose to support one disability advocacy group rather than multiple. they can't give out "competing" grants -- even if we'd like to pretend that's not how it works. but just as i personally do not feel it's inappropriate for websites such as this one not to support other "community" sites, i don't have a problem with other CF groups (even THE group) limiting their endorsements. they simply don't have the resources to look into and do due diligence on every single organization. nor would i personally want them to do so, to be honest.
the CFF is a research funding group, period. no one ever claimed they were supposed to be an umbrella organization for all the smaller CF non-profits.
DAFCF does great work. i hope it continues for a long time to come.
