Hello to everyone. I just wanted to update all of you on the latest information regarding the upcoming Art Festival benefiting the NOMID Alliance. There has...
Jennifer, I got a print donated that I need to get framed and my son will be participating. Also, my family will try to be there. Thanks for everything! ... ...
Teri, I'm sorry to hear your son is ill, but hopefully they are getting it nice and early and get satrt appropriate treatment. What country are you in? You can...
Hello Camille, It's great that we are scheduled the same week. Zach turned 24 in June. We certainly have many years and I am sure many stories to share. I...
Enjoy getting together alice & zach & families. Louise ... From: Jan DaPrato To: nomidsyndrome@yahoogroups.com Sent: Monday, August 11, 2008 1:01 PM Subject:...
Hi all,We're back from GOS in London,arrived back on Saturday night to Crumlin.Jack had a bit of a rough couple of weeks!When we arrived in Gos after the...
Dear Aisling, Oh how my heart goes out to you, Jack and your family and I am in awe of how you manage it all! I have thought of you and this group often over...
Dear All, Sorry to be out of touch lately, but we have had the good fortune of being able to travel some this summer, besides the trip to the NIH for Seth's...
You guys have really had it all. Hang in there and I hope they are able to sort jack's feeding needs soon. Thinking of you, Jack and all your family. Louise ...
Dear Aisling, Young Jack must be a fighter, but we feel for him, and hope that he will be helped by anakinra. We are sure that this would greatly encourage you...
Hello to all, Â Ihaven't writen in awile.My daughter is doing extrmly well. I have been doing good for awie ,I had no headaches for a longtime. but latly i...
hi becky, sorry to hear your headaches are back, but wanted to say congratulations on getting your ged and going to college. it's such blessing you've been...
Thanks louise, Â I give thanks to the anakinra for that.If we didn't have it my daughter and i would be toldally bind and deat by now. Thanks agian, Becky ......
Karen, The brochures this time arrived and they are great. I will be sending them to various doctors in the St. Louis area. Mainly Rheumatology and St. Louis...
Jan, Thanks for getting these brochures out to doctors and for all that you are doing for the fundraiser. I hope you travel safe and avoid the hurricane! ...
Dear Becky, Can you e-mail me your phone number (you can just send the message to me and it will not go onto this open forum) so I can call you if you like to...
Karen, Â I will e-mail you with my phone number. thanks.becky ... From: sfokaren2003 <sfokaren2003@...> Subject: [nomidsyndrome] Re: hello becky To:...
Karen, Â I will e-mail you with my phone number. thanks.becky ... From: sfokaren2003 <sfokaren2003@...> Subject: [nomidsyndrome] Re: hello becky To:...
Dear All, As some of you may know, there is a new drug trial just starting worldwide, sponsored by Novartis, that is open to patients with CAPS, including...
Dear Karen, Many thanks for this wonderful news, and for the hope it brings. The new injection sounds just right for our Molly (now nine years old). With...
Dear Evie, Thanks so much for responding, and I will keep you posted on how it goes. Seth is so happy today and feeling so well that we are realy feeling...
Great news Karen, Hopefully it will continue to do a good job-its fantastic that there may be another drug for some people. Hope you and your family are well. ...
Wow, Karen, that is great news!! I hope Seth continues to do well.. You both were pretty brave to go off of Anakinra. Just think, no shot for a month....
Oh my god Karen !! that sounds amazing, will definately mention it all to prof woo when we next visit great ormond st on 5th sept. Â She has mentioned...
Dear Karen Moore, I am sure Dr Woo is famiiar with ACZ885 as she attended the FMFSAID 2008 conference in Rome, and the doctors from the UK presented research...
no he doesnt have the mutation, will definately speak to prof woo about it. thanks hope he is feeling good today too karen xxx ... From: sfokaren2003...
Hi Karen! Things sound wonderful so far!! I hope it works for Seth. What a blessing to have 1 shot every 8 weeks!! Miranda would be so happy to have that! So...
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