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From: TSS ()
Subject: CJD FOUNDATION INC. (CDC/NIH) and NO WRITTEN CJD QUESTIONNAIRE ???
Date: July 31, 2005 at 10:29 am PST

>>>"It is very courageous of the (Carlock) family to come forward to help people understand CJD," Florence Kranitz, executive director of the non-profit foundation said. "Quite often, families feel very isolated when they find out about CJD. Our mission is to provide support for families. We encourage the family or anyone who has questions to visit our web site www.cjdfoundation.org or call our toll-free support line, 800 659-1991."<<<

CJD VOICE AND CJD WATCH MISSION is to also provide support for ALL cjd and TSE victims and families, not just some of them. WE also provide all available scientific data to the families, not just some of it.

i would personally refrain from asking the new cjd foundation inc. anything, unless it was in written form, now certified.


WHEN ASKING QUESTIONS OR SUBMITTING, please get them in writing. WE must force this issue. just say NO to any oral cjd questionnaire. why else would this cjd questionnaire be oral, secret, not in writing? just keep asking yourself this. how much can a cjd questionnaire cost them. there having to write the data down on something. cjd foundation inc. would not be out of pocket one dime. NOT ONE DIME! IF this cjd questionnaire was submitted IN WRITTEN FORM either by US postal or Electronic mail, then all the family would have to do is copy it themselves, if they wanted to. BUT to continue to force families only to answer questions via the phone and not in writing, should be regarded with great suspicion. WE DESERVE better, we are the majority, 85%+ strong and growing. why are we not good enough to be on the front page of the cjd foundation INC? i will not let this issue die. neither should you...

TSS





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