Below you will see a letter dated April 9, 2008 regarding The NOMID Alliance fundraiser. Many of you are already aware of this event, but in the past several...
Dear Jennifer, I'm Aisling from Ireland,mother of Jack(age 3 in July) who has Down Syndrome and Cinca Syndrome.I know my sisters and friends are going to do...
Hi all, Jack had his second LP today and the pressure was still the same 44 so now Docs are talking about putting in a shunt in his spine to drain the ...
Take me and my group off of your group or I will inform yahoo. _____ From: nomidsyndrome@yahoogroups.com [mailto:nomidsyndrome@yahoogroups.com] On Behalf Of...
Hello to Everyone. I hope all of you received my email last week regarding the upcoming fundraiser. I just wanted to remind everyone to please let me know if...
hope Jack is feeling better and you get to see dr woo soon. Tom's flights to London fo his holiday are booked and we have his passport. He leaves here on July...
That is sooo exciting for Tom,he must be so looking forward to it and London is great,so many things to do and see!Well hope he has a ball.Lots of love Aisling...
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...
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