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 ...
Dear Everyone, I hope that everyone is doing well, and that all who have been to the NIH have found it as helpful as we have. I just got a huge packet in the...
Dear everyone, I hope you all are doing well. I have not seen any new postings for a long while, so I have wondered how you all are out there! Anyone have ...
Hi Karen and all, Funny, I was thinking the same thing that I have not read any posting from our group for many weeks. I hope that means that all is well with...
Hi Karen, Terry and all, We too are waiting for the protocol to start. Alex is now not really responding to the large amount of steroids he is taking and to...
Hi Kate, How is Alex feeling today? I do hope he gets to feeling better soon. Poor little guy. I sure wish they would hurry up with this so called protocol. I ...
Jim & Sherri
mintcrik@...
Jun 2, 2003 2:51 am
405
Dear Everyone, I hope that you all are enjoying summer! I also hope that all the children are doing well, and that Miranda and Alex are feeling better.I have...
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