We would like to remind you of this upcoming event. NOMID Conference at the NIH Date: Thursday, January 23, 2003 Time: All Day Not sure of time yet, but will...
nomidsyndrome@yahoogr...
Jan 20, 2003 5:02 am
330
Hello to all, A note to let you all know we are home and Miranda is done testing. She was the 3rd child they (NIH) have tested. Dr. Goldbach-Mansky did say she...
To anyone that attended the conference, I would appreciate any information or an update on newer methods treating this disease. Zachary, who is 18 now has had...
Hi Jan, thanks for the email. I don't have any information that can help at the moment other that that the NIH are asking parents to come up to washington to...
Dear NOMID syndrome group, I am new to this egroup, and am interested in getting in touch iwth the NIH for the research program for NOMID syndrome that many of...
Hi Karen, Thanks for you email and welcome to the group. The person to contact is Janet Jones (Nurse specialist- Research) Tel# 301-594-8773 9000 Rockville...
Dear NOMID egroup, Thank you to all who have responded, and shared the phone number and info about NIH. I contacted them, and they are definitely interested...
Received a call from Dr. Goldbach-Mansky and Janet Jones Friday 1/31/03. Kieran's genetic testing was completed and he tested positive for the NOMID mutation....
Dear Everyone, Thanks agin for the information and help you all have given me the past few weeks. We will be going to see the doctorss at NIH the week of ...
Dear Karen, Thank you for writing to us all about Seth. May I comment on just one point you raise? You say that if he catches a virus his rash almost...
That is very intresting that Seth's rash goes away when he is sick. Phillip had a rash since birth however since the preylone, naprosyn and Methotraxte he only...
hi kim, i was just wondering if phillip takes zantac. our son, maxwell, takes the same medicines as phillip but he also takes zantac (and enbrel). i thought...
Dear Kim, Thanks for writing. It was very comforting to hear your feelings about people's statements about your child. I have sometimes been tempted to say...
Hi from the Barton bunch, I promise that the trip and photo's will be on the web soon. with regards to you mention of rashes, Alex has a rash all the time...
Hi Karen, Just thought I would write and let you know how our trip was with the NIH. It was BUSY!!!! We had hopes to sight see as well, like the Smithsonian,...
Mintcreek
mintcrik@...
Feb 11, 2003 2:03 pm
345
You guys made me laugh this morning. The Barton's have stinky poop and others (including me) are telling strangers their kid is contagious! I didn't do it,...
Dear everyone, Thanks so much for the detailed information about your NIH experience Sherri! It was so helpful to hear what it is like. I did not know that ...
Well, I believe we have hit a nerve.....hives!!!!......it is probably the one symptom of our children that people (even parents) can not accept. Alice has...
Good Morning, I know exactly what your saying about not doing enough, I have often felt that we were not doing enough to help Miranda. Some people do make you...
Mintcreek
mintcrik@...
Feb 12, 2003 1:50 pm
349
also, if and when you go to the NIH, there is a shuttle bus that will take you the 3-4 blocks to the clinic from the Children's Inn any time of the day....door...
hi karen, welcome to the nomid family... sorry to hear about seth's trials (and yours too, of course) i wanted to let you know that we have plans to visit the...
hi folks, here is janet jones address where she told me that i should send the medical reports to: Janet Jones 10 Center Drive MSC1828 Building 10 Room 9S-205 ...
Dear Everyone, If you need to call Janet Jones, her number is 1-877-278-4330. Her fax is 1-301-480-0676. All they need to start the process of booking an ...
Dear Evie Campbell, I tried to e-mail a message to you via the egroups system last week, but I do not think it went through. Thanks for letting me know about ...
Dear fellow CINCA/NOMID parents, Today we received from Paris the result of screening Molly's DNA. There is a "heterozygous mutation in the CIAS1 gene (R260L)...
David Campbell
D.Campbell@...
Feb 20, 2003 3:38 pm
355
Dear Karen, Many thanks for your e-mail below, kindly providing information about Janet Jones and her telephone and fax numbers. Do you happen to have an...
David Campbell
D.Campbell@...
Feb 20, 2003 3:46 pm
356
Dear fellow CINCA/NOMID parents, Following my earlier e-mail today (please see below) I have now received further information from Dr Prieur. I enquired...
David Campbell
D.Campbell@...
Feb 20, 2003 6:05 pm
357
Dear folks, Following my earlier e-mails today (please see below), I should have said that replies can be sent either to my e-mail address above, or to Evie's:...
David Campbell
D.Campbell@...
Feb 20, 2003 6:22 pm
358
zdear David and Evie, Thank you for sharing your results of Molly's mutation. I feel that we have much in common, since Seth is also very mild. The doctors...
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