Just checking in to see if any will be at the NIH next week, July 7-11.? I hope you are all well and have?a wonderful July 4th ( for those in the USA).? Isaac...
Dear Kathe Give him a big hug from us all, we miss him and you a lot. Oliver and Tilly mention his name a lot and miss his beautiful smile. Best regards Colin ...
Karen, Are you staying at the Inn at all? We get the Sunday July 6th and leave the 11th. Maybe we can get together. WOULD LOVE TO CHAT and let the boys see...
Karen and Michele, Isaac and I are here through the 10th.? Karen, I really look foward to meeting you and your boys.? Michele, you will be here? before you get...
Hi all, Haven't been in contact for a while,Jack has been sick and in and out of hospital. He has had to go back on 5 mgs of prednesol as his symptoms were...
Hi Aisling  Good luck with your appointment in july, i really hope that prof woo can help jack, she has looked after charlie since he was very small less...
sorry to hear Jack's not travelling well. I hope you're able to get some help at GOS on the 28th. Louise Tom in Australia (but currently in London)'s Mum ... ...
Happy Birthday to Jack. Louise ... From: karen moore To: nomidsyndrome@yahoogroups.com Sent: Wednesday, July 09, 2008 7:24 AM Subject: [Norton AntiSpam] Re:...
oops I meant happy birthday to charlie (and for jack on the 29th ) louise ... From: Louise Keatley To: nomidsyndrome@yahoogroups.com Sent: Wednesday, July 09,...
Hi, my name is Candice, mum to Millie, almost 4 years old now. It has taken me a while to post to the group as it has, and still is taking a while to get my...
Welcome Candice and Millie, I am so glad you found us. I am also glad that you found Anakinra. I just got back from the NIH and I will let Karen (who is still...
Jan, I promise well get together. I think of you EVERY time I go to St. Louis!! ... Michele do you ever come up to St. Louis and go to the zoo, Grants Farm or...
welcome candice and millie, we are also one of the "lucky" mild ones. tom has been on anakinra for 21/2 years, and at 14 is well and strong. I think he'll...
thanks for the heads up michelle. I went back to work to make sure we could afford to pay for the anakinra if we no longer got it subsidised. and i had worried...
Welcome Candice & Millie, Its great that you've found this site.My son Jack is 3(almost)and I only found the site last year but like you I was looking for a...
Hi Michelle, Oh my God,whats happening with the anakinra?That sounds scary.I know you said don't freak out but I can't help it!! Can you fill me in a bit more...
Dr. G told me that Amgen is currently NOT producing Anakinra. I am not saying they won't start again (this I don't know), but we are currently buying what...
can we help in the uk too ?? ive just forwarded this post to prof woo to see what she knows about it all. Â Im more than happy to do fundraising and be very...
I just learned of a site that hosts online petitions, this could be a start? http://www.petitiononline.com/create_petition.html ... From: mmkcgriffin...
I think we need a straight answer. Is anakinra ending in the next 6 months? Someone needs to tell us. I sent an email to Dr. G. Hopefully Karen will know...
I remember when Alex was on Embrel and they were in short supply I called the company and explained that my son would die without the drug, the woman on the...
Kate you crack me up! We do what we need to do..I emailed Dr. G. This is her reply: Me to Dr. G. As I got home and thought about the Anakinra I started...
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