HI, Joseph and I will be going to NIH for our follow up. We will arrive late Monday and be at the clinic on Tuesday. Hoping to head out Wed. Just checking to...
Hi, hope everyone is doing well. It's been a while since I've posted anything, I pray everyone is having a wonderful summer! We just got back from seeing a...
Dear Friends, I have good news-the NOMID alliance got the grant from Regeneron this summer to fund the printing/mailing of our brochure about NOMID, FCAS and...
Karen that's fine I will get the negs transferred to a higher grade CD and send you the jpeg file. Great to hear about the funding hopefully this will put an...
Kate, We have never met, but Isaac and I will be at NIH the 22nd - 26th.? I would love to meet you and Alex.??Isaac is a very small 3 year old with curly,...
Karen, This is wonderful news! Information to everyone will only help us out in the long run! Are you going to the AAP convention at the end of October? ...
Dear Kate, Thanks so much to you, and Alex for being willing to let us use his baby photo for the brochure. It will make a huge difference for doctors to see...
Karen, I will try to dig up some pictures of Kieran. I know I have some but I don't know if I have any close-ups. ... From: nomidsyndrome@yahoogroups.com ...
Greetings to Everyone, I am Jennifer Earnhart and I am a board member of the NOMID Alliance. I am also a patient at the NIH with the genetic mutatiion of the...
Another note... If any of you know of anyone who is not part of this yahoo group and you think they would like to participate please let me know. I can email...
Hi Colin Im so sorry to hear your news, please pass on my condolences to your wife as Im sorry to say I know how that feels ! I hope Tillys op goes really...
Hallie and I will be at the NIH from October 3rd-10th. I was just wondering if anyone would be there during that time. I have seen where some of you will be...
Dear Colin and family, I hope all goes well for Tilly and her operation, and we will keep you all in our thoughts and prayers at this time. Our sympathies to...
hello eveone . I' sure Tiffanie would love to do a picture for the event .can you tell me what i need to do .Becky sfokaren2003 <sfokaren2003@...> wrote:...
Im sure Charlie would like to as well, i would need to get it shipped to you then somehow wouldnt I? I saw your sizes and dates so will have a word with him...
Thank you so much for the response that I received today from several of you regarding the upcoming Art Festival that will benefit the NOMID Alliance. So far I...
Dear Karen and NOMID parents, I apologize for not writing sooner. This summer has flown by. I have had many family concerns this past year and most are...
Dear All, Anyone can do artwork, in any form they want, but Jennifer is asking for the children's work that are NOMID patients to be on 8 by 10 to 10 by 13...
Karen I am sorry, this question regarding the artwork should have been directed to Jennifer. Thanks for the quick response. Jennifer, I'll see what I can...
Hello everyone. I just wanted to make a few clarifications on some items regarding the art festival. In regards to shipping...the costs of shipping for the...
Hello all, Colin, I am so sorry for the loss in your family.? My thoughts are with you as you all adjust and also in your travels with Tilly.? I hope her rehab...
Kathe We will be arriving at the Inn on Saturday probably late afternoon. Will definately find you and Issac and look to meeting you both. Tilly, Me, Debra...
Colin, It would be wonderful to meet up with you all.? We arrive very late on Saturday, probably around 11 pm.? But will be around all Sunday.? Looking forward...
Colin Alex and I will be arriving late Sunday Night. (John and Alex have season tickets for the Texans) We will be there the whole week. regards Kate ... ...
Hello to you all, i am not sure how everyone is doing as i have been off line for so long, but have missed the group and the chats. unfortunately things have...
Hola! Hemos entrado en su página(www.nomidsyndrome.com) y decidimos escribirles para poder intercambiar ideas, conocimientos y opiniones acerca de esta rara...
Hello to Everyone! We wanted to let you know that after much discussion that we have decided to change the date of the NOMID Alliance Art Festival. We are very...
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