Hi just wondering if any one will be at the NIH on the 6th on Jan 08 as we will be there with Fynley for a week, if so it owuld be great to meet up with you. ...
Lisa Tilly will still be here and I have returned back this last Thursday so look forward to meeting you all on the 6th January! Happy Christmas Regards Colin...
Hello everyone, Zach and I will be at the NIH Jan 6th - 10th. We will be arriving at the children Inn, Sunday evening late. Looking forward to meeting all...
I am quite overwhelmed, i have just found five minutes to have a peak on the group, to see if there is any post, and have seen that you will all be there the...
hello to all. My daughter and I will be going back to the nih feb 18022 is anyone going then.wow there is alot of you going back I hope everyting gose well...
Dear All, It sounds like the tiem to be at the NIH is Jan 6th! Wow, I hope you all have a good time, and I wish we were there then too. Becky, to bad we will...
Hi Everyone Merry Xmas from Louise & Tom in Australia, Tom has just passed 2 years since starting Anakinra and is still doing really well. He is doing surf...
Happy New Year to Everyone! I hope all of you are having a wonderful holiday season. I hope this new year will bring many happy times for all of you. We are...
Hello Everyone. Some of you may know that I have been dealing with multiple fractures (6 to date) in my feet and now in my spine. These have all occurred in a...
Hi, We are heading up to NIH on Sunday March 16 and will leave Wednesday morning the 19th if all plans stay the same! If anyone is going at that time please...
Researches conducted by The American Academy of Cosmetic Dentistry have found some interesting results. According to a study, vast majority of Americans...
Happy New year to all! We have not posted lately but have enjoyed reading all the news form others. Alice is doing well, except for today when she woke up...
Hello everyone, We have to go back in 3-4 months, due to Zach's ongoing concerns. As far as his avascular necrosis, it has remained localized in his right...
Mike and Kieran are getting to the NIH this coming Tuesday 1/22. ... concerns. As far as his avascular necrosis, it has remained localized in his right femur....
Zach, I am diggin the goatee!! ... concerns. As far as his avascular necrosis, it has remained localized in his right femur. He had a MRI on his left leg and...
Hello All!! I am Lee Parker's mom, Marie. I don't post onto the NOMID site typically but do read most of your posts. Lee and I will be going to NIH next week...
Dear Marie Tilly is still here at the Inn and we hope, pending extension of stay this week, to still be here so hopefully we can meet. Where are you from? How...
We live in Bakersville, North Carolina and should be checking into the Children's Inn Sunday evening. Lee is 16. This visit will be his 4th year. He was...
Hi Marie, Zach and I met you at the very beginning and we shared a room at the hospital. I remember how quickly Lee's rash returned being off the Anakinra....
Hi there everyone. I hope you are all doing well. For Mr. Parker, I don't know of anyone who will be at the NIH that time you are there. Kayla, Carlos and I...
Lee is doing very well. He has an occasional problem with migraines but overall he is doing great. His growth has been extraordinary. He has almost caught up...
Hello to everyone, I enjoyed seeing the pictures of your recent trips to the NIH, and the post from Lee's Mom. It is so hard for me to immagine Michael all ...
Hi I just read Dorelia's post. Joseph and I will be arriving on Sunday the 16th of March and will be there until at least the 19th. Fran Fran Bulone RN Mom to...
Hello to all When my daughter and I are going back to tyhe nih on Feb.18-23. I will be an inpacent and tiffanie and her dad will be staying at the chinldens...
Hi Becky, Alice will be an out patient but she has a room on the 5th floor during the day since she is over 21....so we will be there too. We will be sure to...
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