Dear All, Thanks for your support and for being there to respond to everyone's questions. It is so nice to have this group! We went to the NIH on Dec....
hello to all Qustion where do you find the lot# on the box of anakinra theanks becky sfokaren2003 <sfokaren2003@...> wrote: Dear All, Thanks for your...
look on the actual syringe (dont worry i spent ages looking too) I think its on there karen xxx Becky Bakko <beckybakko@...> wrote: hello to all Qustion...
Karen and all, That is the exact same thing that happened to us. Karen I am so glad you sent the bad lot # to the NIH. I didn't think to do that. That...
Dear frends, our best wishes to all of you from Holland Allthough we are hardly responding we love reading your supportive e-mails! Maybe the next websites...
Dear All, Thanks for your support! To find the Lot number on the Anakinra, you can look on the main box that all 4 weeks of boxes come in, on the back of the...
Hello Karen and everyone else, I just wanted to comment on the great article and photos of you and Seth in the Children Inn's article. I hope Seth and Kieran...
Michele, I am so sorry that Kieran has been sick. I hope he is doing much better now. I am also sorry to miss you at NIH. We leave in the morning. Isaac...
Kathe, Thanks for the note. Kieran is feeling much better. He occasionally has protein in his urine and right now he has a lot. That is kind of scary. Does...
Dear Michelle, Jan and all, Wow, what a wonderful thing that your kids want to help raise money for their birthdays for the NOMID Alliance! Seth did this last...
Hey everyone, We are here with Ashleigh at the Children's Inn. We are on day two of four. So far so good. It's been busy, but so worth it to find out whats...
I just wanted to let you know I have been thinking about you. I am sorry that we could not connect more. I remember how the first visit is so emotional and...
Hi everyone, We are finally home...Ashleigh went in for the MRI/LP and there were complications so she was admitted that afternoon to the pediatric hospital....
Dear Shannon, I sure hope that when you finally got home, you were able to lock yourself away and have a bubble bath after such a scary first trip to the NIH!...
Dear All, Please, anyone interested in helping me in trying to encourage the NIH to keep Dr. Rubin, and other contracted doctors on staff at the NIH call me...
Oh Shannon, I am so sorry Ashleigh had complications. Especially worse since it was your first trip and didn't know what to expect. Kieran has bad spinal...
Karen, I have a friend who does research for some the doctors at the NIH. She is also contracted and not actually hired by the NIH. I'll give her a call and...
Shannon, I am so sorry that your first visit with Ashleigh had so many unfortunate problems. Dr. G. is wonderful. Hopefully, they will be able to give more...
I just wanted to give everyone Ashleigh's carepage name...It is PrincessAshleigh (all one word)...I am not that computer savvy so I don't know how to include...
Dear Jan, and all, Sorry if you tried to call and the phone rang forever. We still have dial up internet, and it was left on last night for awhile. If you try...
Several months ago I wrote to some of the VIPs at the NIH to lend my support to Dr. Rubin to help save his job. I am attaching my letter and the people I sent...
Hi, to all! My 10 year old daughter was diagnosed with NOMID in Oct. She is being seen at UCSF CA. One of her doctors just mentioned the idea of us going to...
Hello Melissa We asked the NIH that if we agree to take part in the research that they would look at Tilly's overall picture, to which they agreed as CINCA is...
Sorry I forgot to mention that the NIH have found so much in 2 visits that the UK have missed for several years: Collapsed vertabre in places where bones have...
Dear Karen I have a very good contact from New York whom I deal with through business. He is in the UK for a couple of weeks and I am due to meet him on...
Dear Colin, Yes, please ask your friend to help the cause! Have them e-mail or call me about any details regarding the FAIR Act A 76 that is the cause of all...
Karen, I think it would be great if you or someone could write a very brief synapsis of what the Fair Act is and how it is affecting patients. I have found in...
Hi everyone, I wanted to send a message with respect to the situation with the contracted Dr's at NIH. I feel at somewhat of a disadvantage in that I am...
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