Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 It is satisfying to read that Senator (Dem., NC) wrote in response to the request for legislation sponsoring a CF recognition month (May). It angers me to read the out of date statistics still being dispense to the public from the CFF that there are only 30,000 persons in the U.S. with CF. (That goes back to the 1960's). They don't even recognize that I exist even though I am one of the volunteers for their statistical program. They also claim the mortality for those with CF averages out to thirty one years of age. That stuff might bring a tear and a donation, but it does not address the fact that there are hundreds if not thousands who have lived with CF for more than fifty years. I expect the Yale CF clinic to put me in a bottle on display upon my demise (I hope to use up all my organs by then, so I'm not a donor) , but if all goes well, on April 9th I'll be seventy three, and that sure messes up the CFF's statistics! Hal Quote Link to comment Share on other sites More sharing options...
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