Guest guest Posted March 10, 1999 Report Share Posted March 10, 1999 It would probably be a great idea to start writing this man to tell him how we feel about his indifference. Beverly G. Larry Schonberger Assistant Director National Center for Infectious Disease Control\ 1600 Clifton Rd. N.E. Bldg. CLFT 3 116 Mail Stop A39 Atlanta, GA 30333 Phone: Fax: E Mail: lbs1@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 1999 Report Share Posted March 10, 1999 Could someone fill me in on this man. I have no idea what you all are talking about. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 1999 Report Share Posted March 10, 1999 Sorry, ! Larry Schonberger is with the Center for Disease Control in Atlanta. He has repeatedly denied that CJD is a problem in this country, that the CDC is " actively surveying " each CJD case in the nation and keeping accurate reports on the number of CJD cases in the US (NOT!!). He has repeatedly belittled anyone who calls to discuss family CJD cases and he has been, shall we say, less than truthful in handling families' questions about CJD. He is sometimes rude and short with people who ask him questions about CJD cases and he continues to say that CJD is not a real issue in this country. Charming man. Beverly G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 1999 Report Share Posted March 10, 1999 Let's not forget that he was also telling families that NIH (Dr. Gibbs) was not performing the 14-3-3 test anymore and telling everyone to send their samples to Dr. Gambetti at Case Western. That was an outright lie and he knew it!!! The man has a political agenda. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 1999 Report Share Posted March 10, 1999 CDC was also " scheduled " to come to the hospital to see my father as he was dying of CJD, and to " question extensively " each of the family members. Never came, never called. Hard to understand. pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 1999 Report Share Posted March 11, 1999 Well said Sheryl. Now, would the group like me to personally invite Dr. Shonberger since Bev sent the address through? It will be easy to do. We have invited Dr. Belay and he declined but maybe Dr. Shonberger would come. I know that it is a small possibility but I am asking this because would we want him there? There is much anxiety towards him and I would hate for it to be uncomfortable for people. I just read Carolyns message. Anyone who is taking care of a living person with cjd or any other illness don't feel bad that you cannot come. Or financially if you can't come. We have been there, done it and understand. Don't even apologize. Now for the word rare. I hate it. I don't like my food cooked rare, I don't like to own anything that is rare (it's too worrisome) and this is not as rare as they want us to think. I use the word unknown. If you will notice in the brochures I never used the word rare once. Newspapers don't want to do stories because it is " rare " and we don't have to worry too much about it. My Mom was talented and opinionated and fun but did not do rare things.....so how the heck did she get this disease? And if this person who did not hunt or garden or have any surgeries can get it than anyone can get it, and I want to know how, especially for my kids. We all need to do the best we can. Writing letters and making people aware is a great start. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 1999 Report Share Posted March 11, 1999 Sheryl your feelings are nothing less than pure honesty,truth,and your firm words made me think.Your words are refreshing . Re: Schonberger >From: STrai6098@... > >I'm going to go off on a rant again, so prepare yourselves.... > >I think Mr./Dr Schonberger (whatever he is) is truly an unfeeling, uncaring >man who seems to personify everything that is wrong with the government, but >in a way we as a group are not doing anything to prove him wrong. In the >Newsday article Pat is quoted as saying that there are 300 members in this >group, however, a few days earlier Robin had updated the list of registrations >to the conference to only 15 people! What is that--5% of this group? That is >pathetic and certainly is not going to get anyone to sit up and take notice! >What are Drs Gibb and Brown and Bastion going to think of our dedication when >they face a tiny group of under 20 people in June? They are going to think >that we don't even care enough to make the effort to get to the first >gathering of CJD victims' families held ANYWHERE IN THE WORLD! How are they >ever going to take us seriously enough for us to get what we want, which I >assume are answers about a cause and a cure? The monies going to cancer and >AIDS and MS, etc didn't just magically start to flow toward those diseases; >large groups of politically active, concerned, affected people got together to >demand that things change. The Huntington's Disease Foundation started 32 >years ago with 6 families, and now it is a multimillion dollar foundation with >corporate sponsors and research grants and yearly fundraisers, etc. It began >with a small mimeographed newsletter of a few pages that went out to families >at risk... It too is a rare disease, but it can only be passed on >genetically. If it does not run in your family, you will NEVER get it, >unlike CJD which can strike anyone at anytime in their adult life and is >transmissible and completely mysterious in its origin. We have a small group >of people who have gotten the ball rolling in the three on-line groups devoted >to CJD, and without their courageous efforts most or all of us who have come >later to this cause would have been lost and ignorant, but much more needs to >be done, and it is up to us to show ourselves to the researchers and the >general population and say WE WILL BE HEARD! The June conference can be a >great starting point for this effort, and I think we owe it to our dead to BE >THERE NO MATTER WHAT! > >I'm sure that I do not speak only for myself when I say that I wish I had >never heard of this damned disease, and that I wish I could call my mother >right now just to say hi, how are you--but I can't and I never will be able to >do that again. My last image of her is horrifying, and not a day goes by >three months later that I do not see that image. I have better ways of >spending my time than on line trying to find information about CJD, or >spending hundreds of dollars trying to find other victims who cannot be >reached through my computer, and I certainly can find some other way to enjoy >what are sure to be several lovely June days than traveling to Indiana this >spring, but I am doing these things and am willing to do much more because >it's the ONLY thing I have left to do for the woman who gave me birth 43 years >ago! Can any of us do less for the people we loved and lost? WE OWE THEM THE >VOICE THAT WAS TAKEN FROM THEM EVEN BEFORE THEY DIED! To do less is to cheat >our dead, and they've already been cheated enough. This is how I feel. > >Sheryl > >------------------------------------------------------------------------ >Ta Da! Come see our new web site! >http://www.onelist.com >Onelist: A free email community service >------------------------------------------------------------------------ >If you have any questions, problems, concerns, etc... please contact Liz at LArmstr853@..., Pat at Ape826@..., Dolly at DBC006@... or Beverly G at Bevalso@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 1999 Report Share Posted March 11, 1999 SHERYL, WELL SAID !!!!!!!!!! I would really like to go. I'm sure I could take a vacation day off. We really do owe our loved ones. This is the least we could do. My mom did so much for me & I always feel that I NEVER did enough for her. PLEASE tell me the date, time & place of this conference. e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 1999 Report Share Posted March 11, 1999 SHERYL, WELL SAID !!!!!!!!!! I would really like to go. I'm sure I could take a vacation day off. We really do owe our loved ones. This is the least we could do. My mom did so much for me & I always feel that I NEVER did enough for her. PLEASE tell me the date, time & place of this conference. e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 1999 Report Share Posted March 11, 1999 SHERYL, WELL SAID !!!!!!!!!! I would really like to go. I'm sure I could take a vacation day off. We really do owe our loved ones. This is the least we could do. My mom did so much for me & I always feel that I NEVER did enough for her. PLEASE tell me the date, time & place of this conference. e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 1999 Report Share Posted March 11, 1999 Amen Sister Sheryl!!! Annette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 1999 Report Share Posted March 11, 1999 I don't know who the Shonberg is, becasue I am new here. But it is my understanding that as soon as they look at the brain on an autopsy they can tell if the brain is spongy and has holes in it. Some one is hiding something from you. What are they trying to hide? Kathy ICQ 2551093 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 1999 Report Share Posted March 11, 1999 Annette, would recommend that you ask them for a copy of the gel stain slides, photos or whatever is appropriate, then send them to Dr. Gibbs or some other clinic besides Gambetti for an independent evaulation. Sugges you call or email Dr. Hansen for guidance. I do not suggest Gambetti as I am told that he will send the final materials to the CDC where they seem to get pigeonholed. Dr. Hansen will be back in his office next Wed, 3/17. Mel in SLC RAL Simpson wrote: > > > CDC is who my mom called, questioning why we hadn't gotten the results. > She talked to Belay who works for Schonberg, who told her they should > have been able to tell us immediately after autopsy. Now, they avoid > returning her calls, and all of a sudden my sister in law gets a call > that the preliminary results are in. NO CJD...................B>S**T. > Go figure!!!!! > Annette > > ------------------------------------------------------------------------ > We are proud as punch of our new web site! > http://www.onelist.com > Onelist: The leading provider of free email community services > ------------------------------------------------------------------------ > If you have any questions, problems, concerns, etc... please contact Liz at LArmstr853@..., Pat at Ape826@..., Dolly at DBC006@... or Beverly G at Bevalso@.... Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.