NEMO Gene Archive

Transplant boy is out of bubble   A  six-year-old boy is able to leave hospital seven weeks after receiving a bone marrow transplant from a donor in the United States. Rhys Harris of Newbridge, Caerphilly county, is one of only about 40 people in the world with Nemo, a

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This from Kevin, Rhys Dad: Tomorrow,,,,  Rhys comes home…… I find it weird to even write?  After what is considered a short period for a complex procedure? 48 days plus 8 days chemo…  I left him tonight and said good bye to some of the Nurses, I was actually

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Article via PubMed here. Studies of patients with congenital immunodeficiency due to mutation of the NF-kappaB essential modulator (NEMO) gene have demonstrated that NEMO integrity is required for NK cell cytotoxicity. Thus, we have studied the physiology of NF-kappaB activation in NK cells during the cytolytic program. In resting

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  Emotional contact just what doctor ordered By DOROTHY SCHNEIDERdschneider@journalandcourier.com There were few hugs at Conner Smith’s homecoming celebration Monday night, but the joy and excitement in the air was tangible. Thirteen-year-old Conner returned to his Lafayette home for the first time since July, when he went to Cincinnati

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  What is NEMO?By Jordan Orange, MD, PhD Mutation of the gene called NEMO can be a serious cause of primary immunodefi ciency. NEMO stands for the “nuclear factor of kappa light polypeptide gene enhancer in B cells essential modulator.” It is more commonly called the “NF- B essential

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 WHO IS JACK? By Roy and Charlotte Hagelin At the 2007 IDF National Conference, when Carol Ann Demaret and Dr. Jordan Orange dedicated their comments to the memory of “Jack” the question on many minds was “Who is Jack?” We are Roy and Charlotte Hagelin from Fairfi eld, New

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Simon’s Mom asks for prayers.   It is with a heavy heart that I write this and ask that everyone get down on your knees tonight and pray for Simon. After a grueling day of phone and e mail communications I just found out that our doctors are afraid

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Dr. Jordan Orange is the first Immunologist worldwide to give a webinar (definition via Wikipedia)  to a primary immune deficiency patient group. He’s also a pioneer regarding primary immune deficiency research (he diagnosed my son Andy). His webinar included NEMO pathway descriptions, a map of NEMO mutations, ectodermal dysplasia and GI issues with NEMO. The

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The same way a map will never have the exact shapes of the earth… But they help you get from point A to point B. Here is the newspaper article: Of genes and motherhood: Even when our children resemble us, the outcome can be very differentBy Carey Goldberg, Globe

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Conner Smith is at day 21 post transplant, he is 13 years 3 months old and he had NEMO deficiency. This from his parents blog: This morning Conner said, “BMTs suck eggs, but it will be worth it… I guess.” Needless to say, Conner isn’t feeling like his normal perky

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