Guest guest Posted January 31, 1999 Report Share Posted January 31, 1999 What type of research is Dr. Ghetti doing on CJD? He was the one who did the autopsy on my mother that confirmed CJD. We were never contacted by him for a history on my mother. This seems rather strange, doesn't it? V. >From bounce-cjdvoice--4736-vargas_l Sun Jan 31 09:24:00 1999 >Received: from [209.207.164.209] by hotmail.com (1.1) with SMTP id MHotMailB87DDCAF14476D1017092D1CFA4D112440; Sun Jan 31 09:24:00 1999 >Received: (qmail 27045 invoked by alias); 31 Jan 1999 17:24:34 -0000 >Received: (qmail 27009 invoked from network); 31 Jan 1999 17:24:31 -0000 >Received: from unknown (HELO imo24.mx.aol.com) (198.81.17.68) by pop.onelist.com with SMTP; 31 Jan 1999 17:24:31 -0000 >Received: from XOXOBB@... by imo24.mx.aol.com (IMOv18.1) id 3HYIa03472 for cjdvoice (AT) onelist (DOT) com>; Sun, 31 Jan 1999 12:22:21 -0500 (EST) >From: XOXOBB@... >Message-ID: 91ddbdfa.36b4914d@...> >Date: Sun, 31 Jan 1999 12:22:21 EST >To: cjdvoice (AT) onelist (DOT) com >X-Mailer: AOL 3.0 for Windows 95 sub 76 >Mailing-List: list cjdvoice (AT) onelist (DOT) com; contact cjdvoice-owner (AT) onelist (DOT) com >Delivered-To: mailing list cjdvoice (AT) onelist (DOT) com >Precedence: bulk >List-Unsubscribe: cjdvoice-unsubscribe (AT) ONElist (DOT) com> >Reply-to: cjdvoice (AT) onelist (DOT) com >Mime-Version: 1.0 >Content-type: text/plain; charset=US-ASCII >Content-transfer-encoding: 7bit >Subject: Re: Conference > >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 What type of research is Dr. Ghetti doing on CJD? He was the one who did the autopsy on my mother that confirmed CJD. We were never contacted by him for a history on my mother. This seems rather strange, doesn't it? V. >From bounce-cjdvoice--4736-vargas_l Sun Jan 31 09:24:00 1999 >Received: from [209.207.164.209] by hotmail.com (1.1) with SMTP id MHotMailB87DDCAF14476D1017092D1CFA4D112440; Sun Jan 31 09:24:00 1999 >Received: (qmail 27045 invoked by alias); 31 Jan 1999 17:24:34 -0000 >Received: (qmail 27009 invoked from network); 31 Jan 1999 17:24:31 -0000 >Received: from unknown (HELO imo24.mx.aol.com) (198.81.17.68) by pop.onelist.com with SMTP; 31 Jan 1999 17:24:31 -0000 >Received: from XOXOBB@... by imo24.mx.aol.com (IMOv18.1) id 3HYIa03472 for cjdvoice (AT) onelist (DOT) com>; Sun, 31 Jan 1999 12:22:21 -0500 (EST) >From: XOXOBB@... >Message-ID: 91ddbdfa.36b4914d@...> >Date: Sun, 31 Jan 1999 12:22:21 EST >To: cjdvoice (AT) onelist (DOT) com >X-Mailer: AOL 3.0 for Windows 95 sub 76 >Mailing-List: list cjdvoice (AT) onelist (DOT) com; contact cjdvoice-owner (AT) onelist (DOT) com >Delivered-To: mailing list cjdvoice (AT) onelist (DOT) com >Precedence: bulk >List-Unsubscribe: cjdvoice-unsubscribe (AT) ONElist (DOT) com> >Reply-to: cjdvoice (AT) onelist (DOT) com >Mime-Version: 1.0 >Content-type: text/plain; charset=US-ASCII >Content-transfer-encoding: 7bit >Subject: Re: Conference > >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 What type of research is Dr. Ghetti doing on CJD? He was the one who did the autopsy on my mother that confirmed CJD. We were never contacted by him for a history on my mother. This seems rather strange, doesn't it? V. >From bounce-cjdvoice--4736-vargas_l Sun Jan 31 09:24:00 1999 >Received: from [209.207.164.209] by hotmail.com (1.1) with SMTP id MHotMailB87DDCAF14476D1017092D1CFA4D112440; Sun Jan 31 09:24:00 1999 >Received: (qmail 27045 invoked by alias); 31 Jan 1999 17:24:34 -0000 >Received: (qmail 27009 invoked from network); 31 Jan 1999 17:24:31 -0000 >Received: from unknown (HELO imo24.mx.aol.com) (198.81.17.68) by pop.onelist.com with SMTP; 31 Jan 1999 17:24:31 -0000 >Received: from XOXOBB@... by imo24.mx.aol.com (IMOv18.1) id 3HYIa03472 for cjdvoice (AT) onelist (DOT) com>; Sun, 31 Jan 1999 12:22:21 -0500 (EST) >From: XOXOBB@... >Message-ID: 91ddbdfa.36b4914d@...> >Date: Sun, 31 Jan 1999 12:22:21 EST >To: cjdvoice (AT) onelist (DOT) com >X-Mailer: AOL 3.0 for Windows 95 sub 76 >Mailing-List: list cjdvoice (AT) onelist (DOT) com; contact cjdvoice-owner (AT) onelist (DOT) com >Delivered-To: mailing list cjdvoice (AT) onelist (DOT) com >Precedence: bulk >List-Unsubscribe: cjdvoice-unsubscribe (AT) ONElist (DOT) com> >Reply-to: cjdvoice (AT) onelist (DOT) com >Mime-Version: 1.0 >Content-type: text/plain; charset=US-ASCII >Content-transfer-encoding: 7bit >Subject: Re: Conference > >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 Hi , Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 1999 Report Share Posted January 31, 1999 Hi , Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 1999 Report Share Posted January 31, 1999 Hi , Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 1999 Report Share Posted January 31, 1999 Sorry, Hit the wrong button. , Which state are you located in? He doesn't ask a history unless it come out as being familial cjd. Their staff is too limited and they have cases they do from all around the world. They have a total of 4 plus an office assistant and a few students. This is a place where they need more research money. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 1999 Report Share Posted January 31, 1999 Sorry, Hit the wrong button. , Which state are you located in? He doesn't ask a history unless it come out as being familial cjd. Their staff is too limited and they have cases they do from all around the world. They have a total of 4 plus an office assistant and a few students. This is a place where they need more research money. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 1999 Report Share Posted January 31, 1999 Sorry, Hit the wrong button. , Which state are you located in? He doesn't ask a history unless it come out as being familial cjd. Their staff is too limited and they have cases they do from all around the world. They have a total of 4 plus an office assistant and a few students. This is a place where they need more research money. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 1999 Report Share Posted January 31, 1999 Elaine, Thanks so much for the information that you sent me! There was some info. regarding a study they did on an italian family. I am also italian & found some similarities. I wish I could join you at that conference but I won't be able to make it. Please let me know how it goes. THANKS AGAIN! e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 1999 Report Share Posted January 31, 1999 Elaine, Thanks so much for the information that you sent me! There was some info. regarding a study they did on an italian family. I am also italian & found some similarities. I wish I could join you at that conference but I won't be able to make it. Please let me know how it goes. THANKS AGAIN! e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 1999 Report Share Posted January 31, 1999 Elaine, Thanks so much for the information that you sent me! There was some info. regarding a study they did on an italian family. I am also italian & found some similarities. I wish I could join you at that conference but I won't be able to make it. Please let me know how it goes. THANKS AGAIN! e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 1999 Report Share Posted January 31, 1999 Robin - Yea, one of our PROBLEMS is his believability! Shar ---------- > From: XOXOBB@... > To: cjdvoice (AT) onelist (DOT) com > Subject: Re: Conference > Date: Sunday, January 31, 1999 4:02 PM > > From: XOXOBB@... > > 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 - Yea, one of our PROBLEMS is his believability! Shar ---------- > From: XOXOBB@... > To: cjdvoice (AT) onelist (DOT) com > Subject: Re: Conference > Date: Sunday, January 31, 1999 4:02 PM > > From: XOXOBB@... > > 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 - Yea, one of our PROBLEMS is his believability! Shar ---------- > From: XOXOBB@... > To: cjdvoice (AT) onelist (DOT) com > Subject: Re: Conference > Date: Sunday, January 31, 1999 4:02 PM > > From: XOXOBB@... > > 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 February 1, 1999 Report Share Posted February 1, 1999 I'm in Illinois, Chicagoland area. On the report it said it was genetic. Is that considered familial?? >From bounce-cjdvoice--4744-vargas_l=hotmail.com (AT) onelist (DOT) com Sun Jan 31 18:09:01 1999 >Received: (qmail 23828 invoked by alias); 1 Feb 1999 02:08:43 -0000 >Received: (qmail 23437 invoked from network); 1 Feb 1999 02:08:11 -0000 >Received: from unknown (HELO imo19.mx.aol.com) (198.81.17.9) by pop.onelist.com with SMTP; 1 Feb 1999 02:08:11 -0000 >Received: from XOXOBB@... by imo19.mx.aol.com (IMOv18.1) id WAINa20089 for cjdvoice (AT) onelist (DOT) com>; Sun, 31 Jan 1999 21:06:10 +1900 (EST) >From: XOXOBB@... >Message-ID: 416d03a7.36b50c12@...> >Date: Sun, 31 Jan 1999 21:06:10 EST >To: cjdvoice (AT) onelist (DOT) com >X-Mailer: AOL 3.0 for Windows 95 sub 76 >Mailing-List: list cjdvoice (AT) onelist (DOT) com; contact cjdvoice-owner (AT) onelist (DOT) com >Delivered-To: mailing list cjdvoice (AT) onelist (DOT) com >Precedence: bulk >List-Unsubscribe: cjdvoice-unsubscribe (AT) ONElist (DOT) com> >Reply-to: cjdvoice (AT) onelist (DOT) com >Mime-Version: 1.0 >Content-type: text/plain; charset=US-ASCII >Content-transfer-encoding: 7bit >Subject: Re: Conference > >From: XOXOBB@... > >Sorry, Hit the wrong button. >, Which state are you located in? > >He doesn't ask a history unless it come out as being familial cjd. Their >staff is too limited and they have cases they do from all around the world. >They have a total of 4 plus an office assistant and a few students. This is a >place where they need more research money. > >Robin > >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 1999 Report Share Posted February 1, 1999 Elaine, You are so right about the Researchers learning from us. Dr. Ghetti was very open to the things I was telling him about what we have learned on the group and even went so far as to say he was getting enlightened too. I then really realized that the research group have not seen what we see. They just get the end result of the brains, not the living loved one that we had. They were surprised at the stories I told of what hard times some go through with the funeral homes, autopsies etc. Yes, we have much to give them too. If we work together something will come of it. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 1999 Report Share Posted February 1, 1999 Hi , I am looking at my Mom's autopsy and on one of the pages at the top it says Molecular Genetic Analysis PRNP. And it just talks about what they found from the DNA and the screening . If you have questions call Francine Epperson. She is very knowledgeable, can find the file. She is the Office Coordinator. The phone number is . Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 1999 Report Share Posted February 1, 1999 What I meant when I said the CJD Foundation next year would be a traditional " academic conference " as opposed to the more informal get-together planned for Bloomington is that I expect there will be a call for papers (with papers/speakers selected by a program committee comprosed of academics), researchers will give formal presentations, the primary audience will be researchers, pathologists, and other health professionals, CEU credits will be offered, etc. I'm sure we'll learn from the researchers who come to Bloomington also (and, I hope, they from us), but they're two quite different kinds of events. I'm looking forward to both. Elaine > From: XOXOBB@... >Subject: Re: Conference > >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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 1999 Report Share Posted February 1, 1999 a G., Where CAN money (in lieu of flowers) be sent for research on CJD? We had the same question at the time of my father's passing. Thanks, Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 1999 Report Share Posted February 1, 1999 Thanks, I'll call this week. We have been pretty much in the dark about the type. Hopefully she will be able to answer specific questions for us. We had a really hard time getting a copy of the report from the neuroligist she had at Northwestern Mem. in Chicago and when I spoke with him about it being being genetic (before we had the results) he downplayed our chances and referred me to a genetics counsler who told me she knew nothing about CJD (I knew more than her). Thank You again and I'll let you know what comes of it. V. >From bounce-cjdvoice--4755-vargas_l=hotmail.com (AT) onelist (DOT) com Mon Feb 1 06:46:16 1999 >Received: (qmail 23388 invoked by alias); 2 Feb 1999 14:46:33 -0000 >Received: (qmail 23223 invoked from network); 2 Feb 1999 14:46:21 -0000 >Received: from unknown (HELO imo17.mx.aol.com) (198.81.17.7) by pop.onelist.com with SMTP; 2 Feb 1999 14:46:21 -0000 >Received: from XOXOBB@... by imo17.mx.aol.com (IMOv18.1) id OCYQa03212 for cjdvoice (AT) onelist (DOT) com>; Mon, 1 Feb 1999 09:45:22 -0500 (EST) >From: XOXOBB@... >Message-ID: ed0b4079.36b5be02@...> >Date: Mon, 1 Feb 1999 09:45:22 EST >To: cjdvoice (AT) onelist (DOT) com >X-Mailer: AOL 3.0 for Windows 95 sub 76 >Mailing-List: list cjdvoice (AT) onelist (DOT) com; contact cjdvoice-owner (AT) onelist (DOT) com >Delivered-To: mailing list cjdvoice (AT) onelist (DOT) com >Precedence: bulk >List-Unsubscribe: cjdvoice-unsubscribe (AT) ONElist (DOT) com> >Reply-to: cjdvoice (AT) onelist (DOT) com >Mime-Version: 1.0 >Content-type: text/plain; charset=US-ASCII >Content-transfer-encoding: 7bit >Subject: Re: Conference > >From: XOXOBB@... > >Hi , > >I am looking at my Mom's autopsy and on one of the pages at the top it says >Molecular Genetic Analysis PRNP. And it just talks about what they found from >the DNA and the screening . If you have questions call Francine Epperson. >She is very knowledgeable, can find the file. She is the Office Coordinator. >The phone number is . > >Robin > >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 1999 Report Share Posted February 1, 1999 Hi a, We had as the memorials for our Mom to Hospice Hospital and to Indiana University Med. Center for CJD. People gave around 750.00 to each one. Unfortunatly Dr. Ghetti hasn't sent in the paperwork to Debbie to get their name on the donation page. It is a great idea to have this information available to people. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 1999 Report Share Posted February 1, 1999 Robin, we did an autopsy on my mom. How old was your mom & how long did it take to get the results? Was it enlightning? Did you find out any new info? e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 1999 Report Share Posted February 1, 1999 Dear Robin; Referring to research money......In January I was sent a request asking where some funds in " lieu of flowers " could be sent for CJD research, as this mans brother had passed away from CJD on January 13, 1999, of CJD. This man's family kindly requested this instead of the usual. I just got word from the researcher saying almost $1000.00 was sent from this. I thought it was great gifts for the family to see and to help this disease for the future. Even though when families face this devastating time maybe this could help all for the future. SIncerly a G. ---------- > From: XOXOBB@... > To: cjdvoice (AT) onelist (DOT) com > Subject: Re: Conference > Date: Sunday, January 31, 1999 6:06 PM > > From: XOXOBB@... > > Sorry, Hit the wrong button. > , Which state are you located in? > > He doesn't ask a history unless it come out as being familial cjd. Their > staff is too limited and they have cases they do from all around the world. > They have a total of 4 plus an office assistant and a few students. This is a > place where they need more research money. > > Robin > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 1999 Report Share Posted February 1, 1999 Pam: I am from Canada so I had referred these people to a Canadian researchers, Neil Cashman, Westaway and Bergeron presently they are working on the development of a blood test for CJD, and the identification and characterization of the prion protein receptor. As you can guess, the availability of a sensitive and specific blood test for the disease would markedly reduce the risk and anxiety of the blood supply. The receptor work may provide insight into how the disease can be treated. Center for Research in Neurodegenerative Disease, (CRND). 6 Queen's Park Crescent, Toronto, ON, M5S1A8. Donations could be directed to the CJD Research Fund c/o Dr. Neil Cashman. On CJD Voice's homepage there is a list of those donations could be sent to. I will forward them on a separate email. I hope this helps. a G. ---------- > From: Pamwboys@... > To: cjdvoice (AT) onelist (DOT) com > Subject: Re: Conference > Date: Monday, February 01, 1999 3:27 PM > > From: Pamwboys@... > > a G., > > Where CAN money (in lieu of flowers) be sent for research on CJD? We had the > same question at the time of my father's passing. > > Thanks, > Pam > > --------------------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
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