Guest guest Posted March 28, 2008 Report Share Posted March 28, 2008 Absolutely, totally agree. Georgina, thank you for posting thought provoking articles. I do not always agree with the drs findings, or sometimes find myself saying " Duh, you could have saved a lot of time and money on this research by asking any parent here who has been through this or a patient who has this " , but your articles by and large have never failed to inform. Often they provoke much good discussion and we can all learn something new. Thank you again for all you do. You are, as said, the glue that binds us. Please keep up the good work. Michele ( 20, spondy) ________________________________ From: [mailto: ] On Behalf Of katherineknbl Sent: Friday, March 28, 2008 6:55 AM Subject: Thank You Georgina Georgina, When my child was first sick, finding this site and connecting with people at the Arthritis Foundation (like Liz )were an incredible blessing to me. I doubt you will ever fully know how much your efforts help us, both in education and support. I bet, many are like me, and totally take advantage of reading the articles you send and in that moment think " thank God for Georgina " but we never follow through and contact you with our thanks. So, here is my small effort to let you know that every day I am thankful for the articles you send and for forming this board that is so helpful. Without you and your endless hours of work, we would be less educated and less supported. You are the glue that binds us and I thank you. In light of this recent misunderstanding I especially wanted you to know that the research you send, is taken as I think it's meant. Not as an affirmation of approval by you, but as legitament research in the field. We will all agree or disagree with research based on our experiences, education or " mom feeling " . I would rather read all that is out there then for you to begin screening research in fear it might offend some of us. I don't want this board to censure information or research, I really feel more knowledge is good knowledge and again, I don't feel you sending reseach out to us is in any way giving your stamp of approval on it's content. Georgina, thanks again for all your work. It doesn't seem enough to just say thank you for all you do! My husband and I might be taking a trip to Hawaii soon, so in that case, count on me taking you out to dinner at the very least. You are a gem. ( 16, syetemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2008 Report Share Posted March 28, 2008 Georgina, I am with you 100%. I run the Australian online support group for JIA, which Issadora obviously took such offense to. I am now sitting here licking my wounds, feeling the same way Georgina appears to be feeling...it takes a lot of extra time to run a group such as this, especially to run it impartially and cover all topics, whether they apply directly to your own family situation or not. To feel that you are perhaps wasting your time, or posting information that is not really appreciated is heartbreaking. I know that we when started the JIA Australian group, our sole intention was to spread the info and share the support. For the most part, it works beautifully. We try to present all sides of a discussion so that people can make up their own mind based on what they read. Nobody makes anyone read anything. To be 'bagged out' on one group is bad enough, to then be bagged out again on another, is deeply hurtful. But we will try to work through it and keep researching and posting articles, for the benefit of the whole group. A misunderstanding is all this may be. But we must always remain aware of each other's feelings, especially when we are all already dealing with the emotions that these medical conditions bring with them. I apologise, again, if any article that I have ever posted, or any comments I have ever made, have offended anyone. It has most certainly never been my intention to do so. Jo Bayly, 5, extended oligo >> Georgina, > When my child was first sick, finding this site and connecting with > people at the Arthritis Foundation (like Liz )were an incredible > blessing to me. I doubt you will ever fully know how much your > efforts help us, both in education and support. I bet, many are like > me, and totally take advantage of reading the articles you send and > in that moment think " thank God for Georgina " but we never follow > through and contact you with our thanks. So, here is my small effort > to let you know that every day I am thankful for the articles you > send and for forming this board that is so helpful. Without you and > your endless hours of work, we would be less educated and less > supported. You are the glue that binds us and I thank you. > > In light of this recent misunderstanding I especially wanted you to > know that the research you send, is taken as I think it's meant. Not > as an affirmation of approval by you, but as legitament research in > the field. We will all agree or disagree with research based on our > experiences, education or " mom feeling " . I would rather read all > that is out there then for you to begin screening research in fear it > might offend some of us. I don't want this board to censure > information or research, I really feel more knowledge is good> knowledge and again, I don't feel you sending reseach out to us is in > any way giving your stamp of approval on it's content. > > Georgina, thanks again for all your work. It doesn't seem enough to > just say thank you for all you do! My husband and I might be taking > a trip to Hawaii soon, so in that case, count on me taking you out to > dinner at the very least. > > You are a gem. > ( 16, syetemic) Quote Link to comment Share on other sites More sharing options...
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