Hi there everyone-greetings from Ireland... Happy birthday Zach.... Eveyone I'm sooo busy at the moment as I am running a campaign against the cutbacks in...
Hi Aisling hope your campaigning gets results. We are all well here. My middle son Joshua is in London at the moment and is off to venice and paris next week. ...
Aisling, You are doing a good thing, so I hope things go your way soon. It is such a sad thing that we must have to fight these battles for our kids, on one...
Hello everybody, Yesterday was our daughter Quinn's second birthday and in her honor we held our first fundraiser to benefit The NOMID Alliance. It was the...
fantastic effort and happy birthday to Quinn. I looked after my 2 year old niece the other day I'm amazed you have the energy to organise such a big event with...
Dear Colleen and Sam, Thanks again for your amazing efforts to raise these funds for The NOMID Alliance in honor of Quinn's birthday! You are amazing, and...
Hi Jennifer, Karen had forwarded me your mailing address for the t-shirts but i must have accidentally deleted it...sorry. Do you mind sending it so I can get...
Amazing. Thank you so much. I know Karen works so hard on the Alliance and any financial help we can provide is greatly needed and appreciated. Happy...
Great job Colleen, I am still trying to come up with a possible Art Fair or "A walk" might be less complicated. I know Jennifer and her husband, along with...
Hi everyone, sorry haven't been around much-just been hectic with my campaign.Wowee and well done to Colleen and Sam for raising a huge amount of money for the...
Way to go Colleen!!! What is seemingly rare now may not be before you know it and spreading the word slowly but surely is bound to have a great impact on NOMID...
Way to go Colleen!!! What is seemingly rare now may not be before you know it and spreading the word slowly but surely is bound to have a great impact on NOMID...
Hi Kate!We won't be going to NIH until Oct. 5th... wish I was there when you and Alex are there! :(Â Hope everything is well, I am right in the middle of 2...
This is Dorelia, Kayla's mom. I just wanted to say hello to all and see how everyone is doing. We will be at the NIH Sep. 8 - 11th, anyone there at that time? ...
Dori, Good to hear from you. Glad things are looking up. Hallie and I were just at the NIH last week. Hope all goes well for little Kayla. Jennifer Earnhart...
A few weeks ago Jan had his labial upper cleft closed. At that time his blood was taken again and - very positive - his inflammation mark was negative. On the...
Dear Daniela, I am glad that your son is improving after his surgery, and that his labs look good too. It sounds like he is also improving with his growth,...
Dori, I sent you a private hello to, and hope it gets to you! I am so glad to hear from you, and that you and kayla are doing better. You have had the...
I do not want the entire group seeing these photos.Because some may recognize me. Here's the link: http://passiooate.zoomshare.com/files/photos.htm Enjoy babe...
Hi Everyone, I hope you are all having a great summer, I havent written for a while but have been keeping up to date with posts, I hope the children are all...
By the way he is on 3ml pred daily, 3 (or now 4) colchicine tablets, and the Anakinra which i give him 0.3ml a day he weighs 3 st 4 pounds and i have a feeling...
... It has been a while since I have posted. My daughter is Julia, 3 years old and has a "complicated" history of high intracranial pressure/ lymph node...
Hi Kara,So glad you wrote! My daughter, Miranda is on Anakinra and has been for almost 6 years, wonderful drug! We were at the NIH on mothers day, which was...
Hi Everyone, My name is Piyush Gandhi and I have a 13month old daughter with NOMID. We live in Brampton, Ontario, canada. She was diagnosed at 10 months by...
Dear Piyush Gandhi, thanks writen us! what's your daughters name? Our daugther Eline is 16 years and during her early years was late diagnosed. there was...
Dear Clara & Gerard Noordhof, My daughter's name in Niyati. How is your daughter doing now? Any drawbacks or any delay in her development. How are the...
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