Hi teri, I'm so pleased the anakinra is working for Grant, and your dr is right, not all nomid kids have the gene mutation. Tom does have it. I will pass your...
Dear Teri, I see that you have been in contact with Louise, but I have not seen any message sent to the group or how you can be contacted, or else I would...
Dear Karen A and all, Thanks for asking how Seth is doing! He continues to be doing very well, and as stable as he was on the Anakinra, and it has been over 2...
Louise, thank-you for connecting Teri. Teri, I cried as I read Grants quick reaction to anakinra, I will never forget Michael's first days, an overwhelming...
Hi Karen  this is great news and im so pleased seth is doing well, charlie got very excited about the prospect of not having daily jabs until our visit to...
We too have dealt with elevated liver enzymes. Sometimes there up, sometimes there down. My son also deals with protein in his urine. We are told it is not...
Hello all, Â We are going back to the NIH for our 4 1/2 year visit, is anyone going to be back there Sept. 23-28 please let me know. We will be staing at the...
Hi everyone, Jack had his tummy surgery yesterday after being cancelled three times over the last two weeks,I had to write to the CEO of the hospital and the...
Karen, You can contact me through this email acct.. I try to check it as often as I get a chance but as I'm sure you can imagine I'm pretty busy with Grant...
Thank you Karen, We will keep Michael in our prayers as well....How old is he now??? When was he diagnosed, and how has the anakinra worked for you all?? I'm...
Hi Karen!! How are you?? I have talked you in soooo long! Apparently I cannot get into the NOMID site to talk! I just set up another account! This is like...
Hi Teri The messages are going through to the yahoo group ok now. What a stressful day for Grant. The kids do seem to be able to tolerate a lot. And you sound...
Teri, Thanks for posting.. I sent you an e-mail to just go to you, and hope you get it. I am never sure if that works or not! Our thought are with you and...
Sherri, How is Miranda? I remember she was seeing a Pulminary specialist, and had red blood cell problems. How was the camping trip? and everyone settling...
Dear All, I have finally figured out how to post the pdf of the artist letter for the upcoming "Evening of Art" NOMID Alliance fundraiser in November. Please...
Dear All, READ THIS!!! Kineret is ow going to be made and sold by a company in Seden, and it sound like they have exclusive rights and all the inventory of...
Dear All, Here is contact info for Biobitrum, and go to the link below to get to the e-mail links. I think that before we each write to this company, we should...
Karen, You are amazng! I definitely agree that sending them all at one time would get their attention. I'll start working on Zach's and send it to you by...
Count me in Karen ... From: nomidsyndrome@yahoogroups.com [mailto:nomidsyndrome@yahoogroups.com] On Behalf Of sfokaren2003 Sent: Monday, September 15, 2008...
thanks karen i will try to do a letter re tom asap to add to the collection. he just had an lp & bloods today so we'll have current details louise ... From:...
Hi everyone! I am new to this site, but cannot be happier that there is a place here for me! I, too, am on Novartis's new ACZ885. I was in the first study out...
Hi David, As a child, I had a lot of problems with my knees. They would swell up and I remember the knee joint almost "slipping" out of place several times. To...
Hi Karen, A while ago when we all first heard about the 'anakinra scare'I e- mailed you a letter re Jack,I'm not sure if you recieved it?Can you let me...
Dear Stephanie,  How good of you to write.  I'm afraid I don't know whether the knee 'slips' because the ligaments are weak at the time, or for some other...
Hi Louise, Obviously I want you to add any correspondence we have had with Grant's unbelievable response to the Kineret...Its sooooo important that we keep...
Hi Karen, My daughter had an interesting take on having all the e-mails sent collectively. She said it might be better to send them all on the same day,...
Karen, I am not the best at writing and hope this is good enough. I can ellaborate more if you think I should. There are before and after photos of Zach...
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