Guest guest Posted March 31, 1999 Report Share Posted March 31, 1999 Bev Writes..... I would like for him to talk to CJD families personally and find out what WE want instead of what the government wants. Beverly G. As he has told me that he is coming to the conference, that will be the perfect opportunity to talk with him. We need as many people as possible to come and represent the CJD Families. We need to work together. Seeing all of us, pictures of our loved ones and that they were real people may make an impact. They still haven't gone through what we have gone through. Until you walk in someones shoes it can't be fully understood. We have to tell them what it is like, the horror stories of body bags and never seeing our loved ones again. The researchers really have no idea, I have seen it. The squeeky wheel gets the oil. This is a wonderful opportunity, lets not pass it up. Robin Quote Link to comment Share on other sites More sharing options...
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