Guest guest Posted February 11, 1999 Report Share Posted February 11, 1999 Dolly, You make some very good points and we need to have objectives to go for. I have enjoyed reading about the aspartame, and it does affect the brain somehow. Who knows something in it could be a catalyst. CJD seems to have taken a rise. It could be because it's more known now or it is taking a rise. I can't answer it, but I always feel it doesn't hurt to talk between us and share the things that our loved ones had in common. That is the way we learn things. Yes all those other things need to be done because they are great ideas that need to be followed through with, but lets not stifle the ideas either. What is the quote that went through the group a few months back??? A small group of people can do great things. Someone needs to send it through again word for word. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 1999 Report Share Posted February 11, 1999 Hi , How are you doing? Was wonderful meeting you and your family. I just got off the phone with the Brockton Enterprise...I wanted them to do an article on CJD..and I believe I am going to get my wish !! I am trying to do my part to get the word OUT! We will be attending the conference in Indiana this June. Take care, and tell your husband we have a " THREE STOOGES " on ice for the next time he visits......nne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 1999 Report Share Posted February 11, 1999 Dolly, I have not been on-line in a while, so I need your help. Is there a web site that I can contact Darcy Kemnitz ? Could I have an address? I would very much like to follow up on this. I have spoke in person to Senator Pacheco of Massachusetts, as well as other elected officials. I am trying to be the " squeeky wheel " . I have contacted every local newspaper I know of, to do a public awareness story on this horrible disease.I am trying to do my part. I hope you can help...Thank you...nne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 1999 Report Share Posted February 11, 1999 Bravo Dolly and ! The time is now for action! I can't stress how important it is that everyone in this group try as hard as they can to get to Indiana in June. The newspapers and radio stations and news programs do not monitor CJD Voice as a rule, but if we have 100+ concerned tax-paying, VOTING citizens gathering in one place to learn more about the disease that took the ones we love and talking to the people who can do the most to help us and others, and we can promote that and get it out before the general public--only then will we really have accomplished something. I was talking to someone in Donna Shalala's office today and she suggested that we add another person to write to: the Surgeon General, Satcher, MD. He was the former head of the CDC, and though I don't know how sympathetic he would be to our cause, inundating him with our stories couldn't hurt. His address is: Satcher, MD Surgeon General of the United States 5600 Fischers Lane Rockville, MD 20857 And I agree with --we really need to form one political entity under the umbrella of the CJD Foundation in order to get the numbers together. The only thing that matters to politicians is numbers of voters who get together to exert political pressure. Three groups of people on the web, while all are worthwhile and have been a godsend to me and my family the past five months, are not going to make others care who have not been personally affected by CJD. Those are the people we need to reach so that our numbers can grow and we can make a concrete, political difference. The material that and I put together for my mother's services have been place in a prime selling spot in my store right next to the cash register. I have had to refill that display three times this winter! People from the UK who see them are amazed that CJD exists here! They thought it was only in England! Through ads I have placed in two Vermont newspapers I have reached five more people who have lost loved ones. They do not have access to computers and thus cannot be reached by our websites. These too are people we need with us. I'll climb off my soapbox now. I hope once again that I have not offended anyone. If I have, I am very sorry. Sheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 1999 Report Share Posted February 11, 1999 Dolly, Thank you so much for getting us back on track. I'd also like to put my two cents in.... These are some of the things we should be working on to get CJD out to the public... 1) Send in your letters to the petitions and contact your local representatives to make them more aware of the petitions. 2) Sign up for the conference in Indiana in June. I know a lot of you complain about money and vacation time, but think about your priorities. I took over 2 months off of work to help care for my mother as she died of CJD so my money situation is tight, but I am going!! 3) Contact local papers and tell your stories! A group of us in Massachuesetts are talking to a reporter and hope to have the article printed this month. 4) Work on getting local chapters of the CJD Foundation started. This was a great discussion that started on CJD Voice that somehow died. We need to pursue this. 5) Pass on information on CJD to all your doctors and dentists. My family has given out copies of CJD information taken from the CJD Foundation website to all our family physicians (Even OB/GYN doctors!) We also put out a flyer at our mother's wake and funeral and we ended up passing out about 85 copies! It is great that we have this outlet to tell our stories. I am especially greatful that I found the Voice because it kept my family sane during a horrible time in our lives. Please keep up the good work (Mel, we love you) and keep the faith. We still have a long way to go but if we all work together, we will succeed! in California === It's never too late to be what you might have been - Elliott ---DBC006@... wrote: > > From: DBC006@... > > Hello Everyone: > > I have given a great deal of thought in writing this email to our groups > because it is important to me that each of you understands my intent. > > Liz, Pat and I founded CJD Voice in approximately May 1997 to support > families during and after a CJD crisis. We also wanted to create and make > available a discussion format on various issues surrounding CJD and other > related illnesses. Our main objectives have been: > > (1) Offering support for families during and after CJD. > (2) Provide a forum for discussion of topics relating to CJD. > (3) Lobby for increased education regarding not only in the public community > but medical communities as well. > (4) Lobby for increased funding for research into CJD. > (5) Lobbying to change the state to state reporting practices of CJD to the > CDC. > > It is important for each of us to read over the above 5 objectives and see > how many of these we have been actively participating in. > > Each week we have: > (1) Members who lose a loved one to CJD. > (2) New members who join our group because they have a loved one recently > diagnosed with CJD. > (3) Inquiries concerning problems with neurological symptoms/diagnosis. > > We have 2 Petitions filed ... how many of us have contacted Darcy Kemnitz to > voice our support of the Petitions and add our personal experience with CJD? > How many of us have written to our elected officials, who represent us on a > State and National level, to voice our support of CJD research and the > Petitions? How many of us have written brief " thank you " messages to those > involved the Petitions work? If anyone needs any help in doing these things, > Pat, Liz and myself are always available for guidance. > > The exchange of personal experiences, through group discussion, offers each > of us a means to vent our concerns and frustrations about CJD. We always > welcome this exchange. The doors are always open for group members to > exchange their personal CJD experiences and ideas. Personally, I have a very > special interest reading all of the exchanges of experiences and ideas. > > While I think it is nice to question Aspartame ... it would seem that we > should close the door on Aspartame and concentrate our discussions and efforts > on our objectives. For those of us who have lost a loved one to CJD, we have > seen the horrible demon called CJD and have experienced the " Walk Through > Hell " with our loved one. We will never, ever forget the total destruction > and devastation that CJD caused in our loved one. God has left us here with > our memories and we must be motivated with the above 5 objectives always in > mind. We must also be united ... and we must not be defeated. To do this > requires participation by each of us ... are we willing to give what it takes > to get the task accomplished? > > May God bless each of you and may He bless and support our CJD efforts. > > Dolly > > > > > > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
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