Dear All, Update on the filming of patients with NOMID: The producer for the film about NOMID is willing to travel as far as the midwest, and southwest to film...
We finally have a semi-answer as to when we will be headed to NIH for further evaluation, but I have to give a big thumbs up first and foremost to Dr Bowyer...
Dear Mike, Thanks for the update, and I am glad that you will be getting some help for your daughter and anakinra soon! I have been thinking of you this week,...
Hi Aisling I tried to do this but could'nt get the link to work. Is there another way to get to it. Louise (Tom in Australia's mum) ... From: aislingmcn To:...
hi aisling still couldn't get the link to work. Is there a new link? louise ... From: aislingmcn To: nomidsyndrome@yahoogroups.com Sent: Saturday, June 13,...
done! How's Jack going? My middle boy Joshua, is off to London in July to do a similar trip to Tom last year. I can't believe it was a year ago. I was so...
hello friend: I am glad to tell you one good news!i have bought one item from one site then i got it within 3-5 working days and the quality is high too.i am...
Hello everyone, We have been back from the NIH for about 6 weeks now and hate posting negative news, since all of you have to endure hardships as well. But...
________________________________ From: Jan DaPrato <jand71054@...> To: nomidsyndrome@yahoogroups.com Sent: Wednesday, June 17, 2009 5:35:06 PM Subject:...
Thanks for the update Jan. I'm so sorry the news isn't better for Zach but its very exciting to hear about his upcoming movie role. We are so fortunate to have...
Hi Jan  My thoughts are with Zach and your family, he is a lovely guy and a true fighter.  Oliver often makes reference to Zach's comments/tunes.  Please...
To all, Here is the link to the info about Ilaris (Canakinumab) made by Novartis that was just approved by the FDA for NOMID/CINCA, MWS and FCAS! Please watch...
Morgan finally has an appointment for the NIH the week of August 17th. Anyone else going to be there? She had her Spinal Tap Tuesday and we received her...
Dear all, I got a bit excited when I saw that Ilaris was approved for CAPS, and misread things, and thought it was approved for all CAPS, but in fact, it is so...
Hi Mike I hope Morgan has a good response to the Anakinra and good luck at the NIH in August. Tom is now on 1 ml / 100mg and weighs 60 + kg. I think we will be...
It is wonderful that your daughter was diagnosed at such an early age and you are able to start on the anakinra. Our daughter, Alice, is 24, diagnosed at 1...
Dear Jan, I am so sorry to hear about Zach's recent problems. He and Lee have met at the NIH before and I know that Lee really liked him. Lee is on the new...
Hello, Good luck for Morgan! My son Jan weighs 6,80 kg at the moment and he is on 0,26 mg Anakinra at the moment - we inject him twice - 0,13 ml in the morning...
About the anakinra dosage question: My daughter Madalyn started anakinra at 10 months of age. When she started I think we were only giving her 0.07cc once...
All I can say is WOW!!! It merely took overnight for Morgan's rash to regress and she now has energy that is unbelievable. It is like pulling teeth to get her...
Mike I'm so happy to hear of Morgan's quick response. I hope she continues to progress. Louise ... From: mike.oisten To: nomidsyndrome@yahoogroups.com Sent:...
Mike, What great news, that's why we call it the miracle drug. I am so happy that she is able to start the medication so young. Zach has been on Anikinra...
Hello everyone and thank you for all of your kind words. Zach did have a great 25th B-day. He was more at ease with the interview than myself; a real...
Hi there everyone-greetings from Ireland... Happy birthday Zach.... Eveyone I'm sooo busy at the moment as I am running a campaign against the cutbacks in...
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