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...
Hello to all, I can also add my frustrations with Nikki. Zachary has been having a nystagmus in both of his eyes. He had an MRI and the neuro-opthalmologist...
Jan, so sorry to hear that Nikki failed to inform Dr G regarding chest pain especially that Zack has already had a stroke and has major clotting problems like...
Dear Kate, Jan and all, Can you hear my screams from San Francisco about this woman! AHHHHHH! Kate, I told you some of my recent saga, and Sherri has many...
Dear All, I thought you all may be interested to read some more complaints from another support group , the PFAPA yahoo group run by Fran. She had told be...
Hello everyone again, I actually called the Opthomology Dept. at the NIH and left a message for Dr. Rubin. He made contact with Nikki and said that Zachary's...
Hi Guys, Just back from a week vacation with Joseph. Although he fevered for part of the trip... he handled it well. The water seemed to help his knee pain......
Dear Everyone, We just got back form a vacation to Disneyland, Legoland, San Diego Wild Animal Park,and San Diego to see family. The drive was not as bad as I...
Karen, I have been corresponding with Dr. G. over the past few days because unfortunately I flared after my eye surgery. The headaches returned with a ...
Hi Karen and the group. I have been thinking and discussing the NIKKI issue and I think that we need to put in complaints. I'm not sure if she even knows what...
As you know, I am going to the NIH tomorrow and will be willing to see the directors myself with any complaints you have against NIKKI, this is not a gang up...
Dear Kate and John, As you already know from my previous e-mails the way I feel about Nikki's incompetence. Zachary could have been having a serious problem...
Hello Kate and all, I wanted to forward this to you regarding the hierchy at NIH with the nurses. I found out today the testing which was suppose to be...
Dear Fran, Kate and All, I am waiting to hear how Kate's visit to the NIH went before I take any actions on the Nikki issue. I am hoping that Alex's...
Hi, Fran,Karen and the group. our trip went well though Alex has a pineal cyst and abnormal leptomeningeal enhancement bilaterally near the vertex shown on MRI...
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