Karen, I understand your concern with the different mutations in these children, I believe that up to now only half of the children have the same gene and for...
Dear Everyone, I got news from Seth's one of Seth's dermatologists, Ilone Frieden (who has published articles on pathology findings on NOMID skin biopsies). ...
Hi Kate, How are things with all of you? Are you finally moved back into your home? Hope it was done on time. I also wanted you to know I really had a great ...
Jim & Sherri
mintcrik@...
Mar 8, 2003 3:20 am
372
Hi to everyone. I know it has been so long since we have been in communication. Last July, Alan, and I had twins. Certainly it was a scary proposition given,...
Alan Downey
alan.downey@...
Mar 8, 2003 3:46 pm
373
I have tried sending emails regarding our updates, and have been unsuccessful, so I am trying the yahoo site. Kristen is doing well. We are planning to attend...
Alan Downey
alan.downey@...
Mar 8, 2003 3:52 pm
374
Kristen was just at Children's this week for an angioplasty, and guess what, they search on the web for NOMID information and found the web-site. Every MD who...
Alan Downey
alan.downey@...
Mar 15, 2003 11:05 pm
375
Hello Susan, That's great to hear that people are finding the website easily and that it is useful. As you suggest, we could add a paragraph or two from...
Bonjour Je m'appele Hervé je vis à Marseille en France. Je suis âgé de 38 ans et depuis la naissance je suis atteins du syndrome cinca/nomid. Je suis sujet...
Hi Everyone! Hope all is well with all of you, things are okay here, everything stays the same. Miranda is having a terrible time with her eyes today. What...
Jim & Sherri
mintcrik@...
Apr 2, 2003 3:21 pm
378
Dear Sheri, I am sorry to hear that Miranda is having such trouble with her eyes. I have been thinking a lot about the Bartons, and wonder how their trip to...
Just want to tell you good luck Karen. And I hope everybody elses trips to the NIH are going well. We've been busy but have kept you all in our thoughts and...
hi there I was really astounded when I received something entirely in French regarding Nomids. I replied back that I do not spreak French. Hello Susan, That's...
HI THERE I was really surprised when I recieced an email entierly in French regarding Nomids. I can't understand it and sent back a rely that I do not speak...
Hello I understand that you are astonished to d?avaoir considering a French advertisement on site NOMID, but I reassure you I come here in order to announce my...
Here is a link to the translator. Copy and paste the text into the box and select the translation you need. Works fairly well. http://world.altavista.com/ ...
While researching gene therapy for a class, I came upon this gene mapping site that shows the chromosome and gene for the symptoms our children have. It is...
Ok now lets keep in touch my friend. I need to know more about this horriffic disease. You see my grandaughter (age10) has it. Thankyou for responding and I...
Hi to all and sorry for not writting sooner but our lovely computer is on the blink.We arrived in Washington on the 13th march to the wonderful noise of...
Thankyou Kate for the update. We are so anxious to get our grandaughter to go to NIH. We anxiously await the call. I am so glad that you informed us (and very...
Jacie, Have you phoned Janet Jones to make an appointment. the reason I ask this is because the NIH are not able to contact you .You have to ask if your child...
Hello Kate, My grandaughters rhumatologist is getting in contact with Janet Jones and then she (the doctor) will notify our daughter. We all have so much to...
Jacie, My understanding of the disease is that with NOMID you also get the meningitis and that no other member shows signs of the same mutation. Basically it...
Dear friends, We are back home from our trip to the NIH, and visiting relatives. It was worth thr trip, and very helpful for Seth. Everyone was so nice, and...
HI all, Just to let you all know. Alex's blood work came back as mutation negative. I do know that he has 11 of the 13 facets of the NOMID syndrome and we are...
Hi everyone, Regarding the genetic test and the mutation, our 3yr old son Ross also tested negative for this mutation. We recently contacted Dr Anne-Marie...
Hello everyone, Zachary is scheduled to arrive at the NIH May 4, Sunday. I know Janet Jones said part of the research was to determine whether growth...
Hi Jan, and everybody else. WE didn't have the growth hormones given to Alex, though I guess I would have done them if they had given me a good case to use...
Jan, I didn't know you guys were going to the NIH. I haven't been in St. Louis for any amount of time to be able to meet with you. If you want to talk about...
Dear Michelle, May I see your presentation, please? With best regards, Yrs., David Campbell ... From: mikeandmichelegriffin To: nomidsyndrome@yahoogroups.com ...
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