Guest guest Posted January 29, 1999 Report Share Posted January 29, 1999 I'd like to add to Robin's note about the conference in June. I think it's very important that as many of us attend as possible! If these doctors are going to regard us as a serious group, we need to have a substantial number of people there. We can sit here on the computer and talk about things and that's great for the healing process, but for anything to be done, we have to show them our faces and be there to listen and to ask hard questions. Also, if we want to have press coverage, we need to have enough attending to make a statement. It would be a joke to call newspapers and television networks to report that 20 people attended a conference with some of the leading TSE researchers in the country there. Please, everyone, make an effort to be there if you possibly can.... Sheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 1999 Report Share Posted January 29, 1999 All three of use are making our plans now, to have time off from work. YES..we will be at the Conference !! My husband will be attending also. nne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 1999 Report Share Posted January 29, 1999 That's great nne, I am really glad to hear this! Here are the people I have registrations from.. Mel Steiger Don Duvall Candy Rehse Sharlene Weiser and Jane Gloria Polack Lesher Myself..Robin Hawkins This is pretty skimpy for the caliber of Researchers that say they are coming. Those are great points Sheryl! Lets make this a success and get more visibility! We need a good crowd. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 1999 Report Share Posted January 29, 1999 How do we get registered ? I could use your help. Thanks...nne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 1999 Report Share Posted January 29, 1999 I will talk it up at the conference in Geneva. There will be a lot of very special and concerned people there. Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 1999 Report Share Posted January 29, 1999 Where is this conference? I would love to attend. I thought I read that it would be in Geneva. Please tell me what city, state, date & cost & any other info. you can give me. Thank you, Kristi118aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 1999 Report Share Posted January 29, 1999 Hi Kristi, Go to the Homepage of CJD Voice and look on the left side and click on the CJD Voice conference. http://members.aol.com/larmstr853/cjdvoice/cjdvoice.htm. It is being held on the campus of Indiana University in Bloomington at the Memorial Union Hotel. The date is June 13 (check-in) 1999 to June 15 (check out) 1999. The 14th will be the actual day of the get together with speakers. Print out the information and there is a registration form in it. Make your own reservations at the Memorial Union then tell me and I will send you my address to send me the meal money. We hope to see you there! Robin XOXOBB@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 1999 Report Share Posted January 29, 1999 Hi Kristi, Go to the Homepage of CJD Voice and look on the left side and click on the CJD Voice conference. http://members.aol.com/larmstr853/cjdvoice/cjdvoice.htm. It is being held on the campus of Indiana University in Bloomington at the Memorial Union Hotel. The date is June 13 (check-in) 1999 to June 15 (check out) 1999. The 14th will be the actual day of the get together with speakers. Print out the information and there is a registration form in it. Make your own reservations at the Memorial Union then tell me and I will send you my address to send me the meal money. We hope to see you there! Robin XOXOBB@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 1999 Report Share Posted January 29, 1999 Hi Kristi, Go to the Homepage of CJD Voice and look on the left side and click on the CJD Voice conference. http://members.aol.com/larmstr853/cjdvoice/cjdvoice.htm. It is being held on the campus of Indiana University in Bloomington at the Memorial Union Hotel. The date is June 13 (check-in) 1999 to June 15 (check out) 1999. The 14th will be the actual day of the get together with speakers. Print out the information and there is a registration form in it. Make your own reservations at the Memorial Union then tell me and I will send you my address to send me the meal money. We hope to see you there! Robin XOXOBB@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 1999 Report Share Posted January 30, 1999 In a message to me Don Wrote: That small number would be an embarrassment to us and the researchers. Do you have an absolute minimum number of reservations to reach and final deadline to meet that number before ... and I hate to say it ... calling it off? Don Hi Don, Yes thats right. I have 8 people who have actually sent me their registrations. To get our meeting room free of charge we need 30 reservations. To show the Researchers that we are a serious group we need at least 100 people to show, more would be excellent!!! Does anyone else know of a conference here in the U.S. of actual people who had been affected by CJD? If we get a mass of people together it will show that it isn't as rare as they claim, especially if we have newpaper coverage. I am writing to our Indiana Senators to come along with asking them to support our petitions. I also tell them this isn't just for us, it is for the U.S. I wouldn't wish this disease on my enemy. If you write to yours be sure to give them my e-mail address....XOXOBB@... so I can give them the information. In fact write to Funeral Directors and Pathologists, everyone is welcome. This can turn into a great thing, I am so surprised at how many contacts have come out it for me. They are interested, lets show them we are serious. It would be a shame if we had to cancel this, don't you think everyone? Plus don't we all get together and meet each other. It will be a good time. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 1999 Report Share Posted January 30, 1999 In a message to me Don Wrote: That small number would be an embarrassment to us and the researchers. Do you have an absolute minimum number of reservations to reach and final deadline to meet that number before ... and I hate to say it ... calling it off? Don Hi Don, Yes thats right. I have 8 people who have actually sent me their registrations. To get our meeting room free of charge we need 30 reservations. To show the Researchers that we are a serious group we need at least 100 people to show, more would be excellent!!! Does anyone else know of a conference here in the U.S. of actual people who had been affected by CJD? If we get a mass of people together it will show that it isn't as rare as they claim, especially if we have newpaper coverage. I am writing to our Indiana Senators to come along with asking them to support our petitions. I also tell them this isn't just for us, it is for the U.S. I wouldn't wish this disease on my enemy. If you write to yours be sure to give them my e-mail address....XOXOBB@... so I can give them the information. In fact write to Funeral Directors and Pathologists, everyone is welcome. This can turn into a great thing, I am so surprised at how many contacts have come out it for me. They are interested, lets show them we are serious. It would be a shame if we had to cancel this, don't you think everyone? Plus don't we all get together and meet each other. It will be a good time. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 1999 Report Share Posted January 30, 1999 In a message to me Don Wrote: That small number would be an embarrassment to us and the researchers. Do you have an absolute minimum number of reservations to reach and final deadline to meet that number before ... and I hate to say it ... calling it off? Don Hi Don, Yes thats right. I have 8 people who have actually sent me their registrations. To get our meeting room free of charge we need 30 reservations. To show the Researchers that we are a serious group we need at least 100 people to show, more would be excellent!!! Does anyone else know of a conference here in the U.S. of actual people who had been affected by CJD? If we get a mass of people together it will show that it isn't as rare as they claim, especially if we have newpaper coverage. I am writing to our Indiana Senators to come along with asking them to support our petitions. I also tell them this isn't just for us, it is for the U.S. I wouldn't wish this disease on my enemy. If you write to yours be sure to give them my e-mail address....XOXOBB@... so I can give them the information. In fact write to Funeral Directors and Pathologists, everyone is welcome. This can turn into a great thing, I am so surprised at how many contacts have come out it for me. They are interested, lets show them we are serious. It would be a shame if we had to cancel this, don't you think everyone? Plus don't we all get together and meet each other. It will be a good time. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 1999 Report Share Posted January 30, 1999 nne, Go to the Homepage http://members.aol.com/larmstr853/cjdvoice/cjdvoice.htm. Click on the CJD Voice conference and it prints out nicely. Make your reservations at the Memorial Union and then write to me and I will send you my address to send the meal money. If you have any other questions don't hesitate to ask. Robin XOXOBB@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 1999 Report Share Posted January 30, 1999 nne, Go to the Homepage http://members.aol.com/larmstr853/cjdvoice/cjdvoice.htm. Click on the CJD Voice conference and it prints out nicely. Make your reservations at the Memorial Union and then write to me and I will send you my address to send the meal money. If you have any other questions don't hesitate to ask. Robin XOXOBB@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 1999 Report Share Posted January 30, 1999 nne, Go to the Homepage http://members.aol.com/larmstr853/cjdvoice/cjdvoice.htm. Click on the CJD Voice conference and it prints out nicely. Make your reservations at the Memorial Union and then write to me and I will send you my address to send the meal money. If you have any other questions don't hesitate to ask. Robin XOXOBB@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 1999 Report Share Posted January 30, 1999 My understanding is that it is by invitation only and is focused on preparing guidelines related to Infection Control. It is at the end of March in Geneva, Switzerland. I will find out if anyone else can attend. Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 1999 Report Share Posted January 30, 1999 My understanding is that it is by invitation only and is focused on preparing guidelines related to Infection Control. It is at the end of March in Geneva, Switzerland. I will find out if anyone else can attend. Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 1999 Report Share Posted January 30, 1999 My understanding is that it is by invitation only and is focused on preparing guidelines related to Infection Control. It is at the end of March in Geneva, Switzerland. I will find out if anyone else can attend. Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 1999 Report Share Posted January 31, 1999 Elaine, I am glad to hear that you are coming. Welcome! I would say that our conference (get together) covers both the academic aspect and the social too. With the Reserchers that will be with us I am sure that we will be able to learn much from them. Everyone needs to have questions ready, and I am sure many will just come up in the course of the talks. Once again the Researchers that will be there are Dr. Brown...Dr. Clarence Gibbs...Dr. Bernadino Ghetti...Dr. Bastian. Both Dr. Tom Pringle and Dr. Gambetti said they would be glad to do phone talks if we would like. Marie Kassai said that she would be glad to do a talk for us and she can also tell about the WHO Conference in Geneva that she is going to attend in March representing CJD Voice. BTW we invited Dr. Belay from the CDC but he declined our invititation. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 1999 Report Share Posted January 31, 1999 Either that or he was afraid to come knowing we have " problems " regarding the CDC. Also I have had many people say they will be sending their registration forms in...those are just the ones that I have in my hot little hands. As I get the forms I will send the names through. I understand that it is only Jan. 31, and the registration deadline is March 31st. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 1999 Report Share Posted January 31, 1999 Either that or he was afraid to come knowing we have " problems " regarding the CDC. Also I have had many people say they will be sending their registration forms in...those are just the ones that I have in my hot little hands. As I get the forms I will send the names through. I understand that it is only Jan. 31, and the registration deadline is March 31st. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 1999 Report Share Posted January 31, 1999 Either that or he was afraid to come knowing we have " problems " regarding the CDC. Also I have had many people say they will be sending their registration forms in...those are just the ones that I have in my hot little hands. As I get the forms I will send the names through. I understand that it is only Jan. 31, and the registration deadline is March 31st. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 1999 Report Share Posted January 31, 1999 Robin - Could be the CDC doesn't think we're big enough to be a viable forum. Maybe if we have a large enough turnout in June, they might begin to take us more seriously! Shar P.S. GO FALCONS!!! ---------- > From: XOXOBB@... > To: cjdvoice (AT) onelist (DOT) com > Subject: Re: Conference > Date: Sunday, January 31, 1999 10:22 AM > > From: XOXOBB@... > > Elaine, > > I am glad to hear that you are coming. Welcome! > > I would say that our conference (get together) covers both the academic aspect > and the social too. With the Reserchers that will be with us I am sure that > we will be able to learn much from them. Everyone needs to have questions > ready, and I am sure many will just come up in the course of the talks. Once > again the Researchers that will be there are Dr. Brown...Dr. Clarence > Gibbs...Dr. Bernadino Ghetti...Dr. Bastian. Both Dr. Tom Pringle and > Dr. Gambetti said they would be glad to do phone talks if we would like. > Marie Kassai said that she would be glad to do a talk for us and she can also > tell about the WHO Conference in Geneva that she is going to attend in March > representing CJD Voice. BTW we invited Dr. Belay from the CDC but he declined > our invititation. > > Robin > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 1999 Report Share Posted January 31, 1999 Robin - Could be the CDC doesn't think we're big enough to be a viable forum. Maybe if we have a large enough turnout in June, they might begin to take us more seriously! Shar P.S. GO FALCONS!!! ---------- > From: XOXOBB@... > To: cjdvoice (AT) onelist (DOT) com > Subject: Re: Conference > Date: Sunday, January 31, 1999 10:22 AM > > From: XOXOBB@... > > Elaine, > > I am glad to hear that you are coming. Welcome! > > I would say that our conference (get together) covers both the academic aspect > and the social too. With the Reserchers that will be with us I am sure that > we will be able to learn much from them. Everyone needs to have questions > ready, and I am sure many will just come up in the course of the talks. Once > again the Researchers that will be there are Dr. Brown...Dr. Clarence > Gibbs...Dr. Bernadino Ghetti...Dr. Bastian. Both Dr. Tom Pringle and > Dr. Gambetti said they would be glad to do phone talks if we would like. > Marie Kassai said that she would be glad to do a talk for us and she can also > tell about the WHO Conference in Geneva that she is going to attend in March > representing CJD Voice. BTW we invited Dr. Belay from the CDC but he declined > our invititation. > > Robin > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 1999 Report Share Posted January 31, 1999 Robin - Could be the CDC doesn't think we're big enough to be a viable forum. Maybe if we have a large enough turnout in June, they might begin to take us more seriously! Shar P.S. GO FALCONS!!! ---------- > From: XOXOBB@... > To: cjdvoice (AT) onelist (DOT) com > Subject: Re: Conference > Date: Sunday, January 31, 1999 10:22 AM > > From: XOXOBB@... > > Elaine, > > I am glad to hear that you are coming. Welcome! > > I would say that our conference (get together) covers both the academic aspect > and the social too. With the Reserchers that will be with us I am sure that > we will be able to learn much from them. Everyone needs to have questions > ready, and I am sure many will just come up in the course of the talks. Once > again the Researchers that will be there are Dr. Brown...Dr. Clarence > Gibbs...Dr. Bernadino Ghetti...Dr. Bastian. Both Dr. Tom Pringle and > Dr. Gambetti said they would be glad to do phone talks if we would like. > Marie Kassai said that she would be glad to do a talk for us and she can also > tell about the WHO Conference in Geneva that she is going to attend in March > representing CJD Voice. BTW we invited Dr. Belay from the CDC but he declined > our invititation. > > Robin > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
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