Dear Dori, I am going to try to call you this week! I now am a bit worried about meeting Nikki, and what it will be like on our trip the 18-24th. You are not...
Dear Everyone, If you have any ideas for fundraising, besides what I have already done please let me know! I put up the NOMID Allliance P.O.Box address, and...
Hello everyone, I am getting nervous now. We have just requested to get into NIH and my pediatrician faxed over today the info they requested. I have...
I agree with you both (Kathe & Karen)! We are our own best advocates. Karen, you're letter made me laugh (especially the Veruka part!) B.S. is just like...
Dear All, As a Speech Pathologist (in Australia), I'm sorry some of you have had such bad experiences! We're normally known for being the"nice" health...
Hi, I have not posted alot but we are new to NIH (since Dec). Our next appt is in March. Before NIH he was on naprosyn and maintaining very well (fevering...
Hi, just wondering if any of your children have had any bladder/ kidney problems associated with the disease? Hallie is having some issues and we are not sure...
Hello to All, I have read the posts over the past few days and there is obviously some great frustration with some things and justifiably so. When it comes to...
Dear Jennifer and everyone, Thank you for your wonderful post, it was exacty how I feel too! No matter the occasional bumps in the road, we are getting...
I know deep down inside this is the best thing for my son. Dr Lewey (sp) has been so wonderful and responded to our needs during this time of a new drug. I...
dear all my daughter and i are going back to the nih on sunday the 5th .I just went to the nerolagy today and i'v been seening them for my headaches and now...
Dear all. What a week we had. Though the weather was good and meeting Karen and Sherri was just great.Sherri thanks for the Dora cup it went down well. Alex's...
Hello to all! Our trip ended last night when we pulled in the driveway at 10:30pm.. Long trip. Lot of traffic! I think next time we won't leave on a friday...
hi .yeah my dauthe has bladder proploms she is on amoxacillin daly .so she dosen't get infections .I have had blader infections to and kidnee stome and kidnee...
Hello to everyone, we are finally back safe and sound at home. What a trip! I am so glad to be home, our trip home was tempered with some chaos. My flight...
... No ... and ... he ... long ... it ... to ... It ... found ... illness, ... be ... nothing ... hope ... different. ... happy ... to ... people, ... the ... ...
... maintaining ... started ... and ... remind ... she ... glad ... ever ... giver, ... occasion ... best ... Tammy, I hear you loud and clear! You have every...
This is a stretch but what about the networks doing a piece on "Periodic Fevers". It may seem a little out there but it might help with the funding raising....
I have been a bit worried as i having been checking the post on our group and have not seen any new ones, but i have just found them and had a lot to read up...
Hello Lisa, I am so sorry for all you and Fynley are going through . It is hard to understand why you, and many of us even in the US, have to go through so...
Hi Lisa. I am fairly new to the group. My daughter and I both have NOMID and the mutation. I am so sorry to hear that you are having such a difficult time...
Hi Lisa, Im really sorry for poor little Fyn, he is so gorgeous and doesnt deserve any of this as neither do you or the rest of your family, Charlie very often...
Dear Everyone, Thank you to all that have looked at the site, and for the positive feedback, and tips. I have teid to improve it as I go, and learn more. ...
Thankyou for all your replys, i some times forget i have the group to talk too and i feel better when i get replys from everybody and realise how much we all...
Hi Lisa, My name is Sherri, my daughter Miranda has NOMID. I just read one of your post and it sounds like Finley and miranda have the same history. As far as...
Hey Karen, Are you alright? I have been waiting to hear from you and I know your busy with work and the kids, please get back to me! I need to know your ok. ...
Hi Sherri and everyone, Sorry I haven't posted in a while, things have been a bit "messed up" for lack of better explaination. Despite it all we are all doing...
Dear Everyone, Seth and I are going back to the NIH on Feb. 18-24th, and wondered if any of you will be there. I guess we missed the big gathering last week,...
I thought I would do the same as Karen... and see if anyone on this list is making the trip to NIH during March 20-24? Joseph will be an outpatient as far as I...
Having problems with message search?
Fill out this form to ensure your group is one of the first to be migrated to the new message search system.
