Dear Sherri and All, We are here ,and all is ok, but our dates have been moved up for our NIH trip to July 30-August 3rd. Sherri, will that be when you will...
... be ... tomorrow ... It ... but ... NOMID ... we ... apartment ... paperwork ... but ... to ... and ... done, ... legal ... NOMID ... as ... exempt ... but...
Hi all, I hope everyone is well and enjoying there summer. Karen, I am so excited for you about you adoption process. I have several friends who have...
Hi Becky. Our dates were changed also. I was so dissappionted because I was looking forward to meeting you and Karen D. I will still be having my eye surgery...
thankxs jenifer .i was hoping we can meet to but dr.g is out of town that week.so we had to change it.my headachees or doing better now i still have them but...
Ok, this is crazy! I need you all so please send a note ! I miss haveing you all to share with and wonder how you are all doing so often. I had a horrible...
<br />Hi Karen,<br /><br />I'm so sorry that you had such a bad week. My thoughts and prayers are with you & your message made me cry!<br /><br />I have had...
Dear Karen A. and Louise, First I must say I am so sorrry for you Karen- Thanks for your postings, and my heart goes out to you Karen. I am out of town for a...
Hello all, We are back from NIH again. We are going every four weeks now for I do not know how long. I am meeting some wonderful families each time I go. I...
Hello to all, This is a long shot, but if any of you will be near the NIH, or live close enough to visit the NIH tomorrow (Friday July 28 around noon) call Dr....
I am so glad to hear from you all again. First I wanted to give you a link to have a peek at, I have been searching for an alternative or aid for injections....
Hello All and to you especially Kathe, We just got back from the NIH. Kieran is doing great! We had a HORRIBLE time there. He was sedated the first day we...
Hi Karen I'm still having email problems. The links both appear to have been archived. I think I've added a photo of the front page to the files section. We do...
Hello Karen and all the NOMID families, Does anyone know if Dr. G. is out of town this week? I know she was going to Yellowstone soon, a well deserved...
Dear Louise, I was able to see the photo in the files, and would love to read this article! If you ever are able to upload it, or even cut and paste the text...
Thanks Karen for all your information. I did call the eye clinic and the NIH operator, looking through all my papers I was able to find the additional...
Alex and I will be up at the NIH on the 13th for a week. This is his 2.5year visit. doesn't time fly. where would be our children without the help and support...
Hi Kate, I was thinking of you the other day, funny to see you post. Stephen was asking when we could go back to the fun hospital because he misses his "best...
Dear Everyone, Please tune in to Bloomberg news tonight after 5 pm eastern, 2 pm pacific. I am not sure when it will be on,so turn it on and watch I guess all...
Hi Karen I just got a copy of the report printed by the Bloomberg News. See below. Amgen Arthritis Drug Kineret May Fight a Rare Genetic Disease 2006-08-09...
Fantastic news Karen. The article is a good summary Louise ... From: sfokaren2003 To: nomidsyndrome@yahoogroups.com Sent: Thursday, August 10, 2006 3:42 AM ...
Dear Jocelyn, Thanks for finding this news article-it was supposed to air on TV, so we had Bloomberg on all afternoon. I will have to look at teh website. It...
Dear All, Just letting you know that the "direct quote" was really not exact. They pieced together a few things into that, and made a new sentence. Also, the...
I can't wait to see the article in the medical journal, this is amazing, between Tom's front page appearance, Bloomberg recognising Seth, Karen, Dr GB and the...
Dear All, I just read the article, and was so impressed with it. I wanted you all to note that the last line of the text states, "We are indebted to all the...
Hi Karen, I had the same problem with the "translation" of what i said to the reporters. The TV story link is no longer on the website but I will email them &...
Hi my dear friends, Just to add to the Nikki problem she has made one very stupid mistake which I explained to her will be complained about this Monday. as you...
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