Guest guest Posted November 14, 1998 Report Share Posted November 14, 1998 Why can't we do a mass e-mail requesting the questionaire and survey results? we have everyone's e-mail address so why not use that, that is if no one objects to the use of the address, to let them know that we want to see the results of the survey. TDH is probably under the mistaken idea that there is no real interest and concern about getting information and stats out about CJD. dolores colunga-mortman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 1998 Report Share Posted November 14, 1998 Dolores and all: It would be great if you would start writing and calling Rawlings at the TDH regularly and have your sister do it too. Anyone else in Texas, (I know Mel M. and Terry both talk to TDH a lot) who can do so, should. As far as people outside of Texas, I don't think it would hurt, but I doubt it would do much good. I am sure that you would get the standard reply to write the health departments in your respective states. I have found that TDH is very low-keyed and operates on a low budget and a slow time frame. They also operate very confidentially and are not willing to give out much information. I feel confident that none of us will ever see a written questionnaire. There are other states that appear to be more cooperative and I urge everyone to write and/or call their respective local and state health departments to ask for reportability status and CJD statistics. Beverly G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 1998 Report Share Posted November 14, 1998 Dolores and All, I think the mass e-mail is a great idea. Robin tried to get that survey from and ran into a brick wall. Something about they wanted to see what the results were before releasing any info. L. -------- >From: STMKR@... >To: linda.lesher@... >Subject: RE: Re: survey >Date: November 14, 1998 > >From: STMKR@... > >Why can't we do a mass e-mail requesting the questionaire and survey results? >we have everyone's e-mail address so why not use that, that is if no one >objects to the use of the address, to let them know that we want to see the >results of the survey. TDH is probably under the mistaken idea that there is >no real interest and concern about getting information and stats out about >CJD. > >dolores colunga-mortman > >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 1998 Report Share Posted November 14, 1998 << Something about they wanted to see what the results were before releasing any info. >> That is the 'canned' answer they are even giving " higher powers " than the public sector. liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 1998 Report Share Posted November 14, 1998 My 2 cents worth--a mass E- mail will just make them mad- and will not get results you want---other things have worked better in the past---more subtle things - political pressure from the right person---right use of the press- having information they do not have - making them look inept by having more accurate - update information on cases---you like to get spammed?-they dont either - if you are from out of state - you are no threat to them---be persistant but be nice-- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1998 Report Share Posted November 15, 1998 If your state has not made CJD reportable --be active in getting that done in your home state---get animal " byproducts " out of feeds and products - write manufactors --tell them you want to use their products and how to make them safer-tell them you dont want road kills - dead dogs -cats -downer cows in your food- medicines -soaps and cosmetics---they want to sell more product -- dont come across as a kook- or they will tune you out--- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1998 Report Share Posted November 15, 1998 Definitely agree with DrJolyn regarding mass email. Send your email comments to state and congressional reps. Inquiries may follow; and they will be from above and more likely to be noticed. DrJolyn37@... wrote: > From: DrJolyn37@... > > My 2 cents worth--a mass E- mail will just make them mad- and will not get > results you want---other things have worked better in the past---more subtle > things - political pressure from the right person---right use of the press- > having information they do not have - making them look inept by having more > accurate - update information on cases---you like to get spammed?-they dont > either - if you are from out of state - you are no threat to them---be > persistant but be nice-- > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 1998 Report Share Posted November 16, 1998 My thanx to " robtom " for the CJD Voice Conference info. I reviewed and it seems like a good chance for open discussion and good food. I may have missed it, but I did not see a conference agenda (of CJD issues/topics/study groups/workshops/etc). It might be useful to assign topics (for research/discussion/presentation). The flow of information and dialogue and results might have more meaning and follow on work.. Following each workshop discussion, its panel and participants could outline the next steps that CJD Voice might follow in its continuing study. Or is all of this a bit premature???????? DrJolyn37@... wrote: > From: DrJolyn37@... > > If your state has not made CJD reportable --be active in getting that done in > your home state---get animal " byproducts " out of feeds and products - write > manufactors --tell them you want to use their products and how to make them > safer-tell them you dont want road kills - dead dogs -cats -downer cows in > your food- medicines -soaps and cosmetics---they want to sell more product -- > dont come across as a kook- or they will tune you out--- > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 1999 Report Share Posted March 27, 1999 Rodney, I'd be glad to perticipate in a survey. Barbara's looks OK to me. Anything to help the cause. ne, 59, Lawrenceville, NJ ___________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com/getjuno.html or call Juno at (800) 654-JUNO [654-5866] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 1999 Report Share Posted March 28, 1999 Rodney, This should be interesting. We've already done several surveys in the group in the past, but since we have so many new people, they will benefit from this as well as be able to give some input. This will also give you something to focus on and take your mind off of your RLS..........as well as those filling it out.....lol Good luck! Connie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 1999 Report Share Posted March 31, 1999 Ana, I must have missed the survey too, not because I slept through it ofcurse. But I am always interested in all the ways we are alike.....kind of like a bunch of Siamese zillions hooked together. Let me know and reprint the survey when you get it. I'd love to see what it is! Lee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 1999 Report Share Posted March 31, 1999 Ana, I must have missed the survey too, not because I slept through it ofcurse. But I am always interested in all the ways we are alike.....kind of like a bunch of Siamese zillions hooked together. Let me know and reprint the survey when you get it. I'd love to see what it is! Lee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 1999 Report Share Posted October 17, 1999 LEAVE IT THE WAY IT IS!!!!!!!!! KIMBERLY/FLORIDA Quote Link to comment Share on other sites More sharing options...
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