NEMO Gene Archive

This from Jack’s Dad: Yesterday, was the hardest and most difficult day of our lives. Charlotte, Christina and I laid Jack to rest. Jack fought a long and hard battle in his 4 1/2 years on this earth. He was the bravest, strongest man I knew. Jack was laid

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Dear Charlotte and Roy, We want to express our heartfelt sympathy. May the love of family and friends comfort you. Paulina & I wanted you to know that we are grieving with you and thinking of you always. Jack’s battle against the NEMO primary immune deficiency has inspired many

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Please say a prayer for Jack. Jack had his first transplant a year ago. More about Jack’s story here and here. This from Jack’s mom blog last Saturday: He is still having breathing problems and is still on oxygen. This pneumonia is really kicking his butt. The doctors have

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This from Simon’s mom: We thank God everyday for the engraftment of 99% and keep praying it holds strong and steady. We had some of Simons vomitting issues come on strong the last two days with vomitting to the point of dry gagging while I hold him over the

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We’re hoping for no fevers for JT and the calcium issue to resolve soon. This from cure4treebeard.org: Tomorrow is another big day. We need for JT to tolerate his feeds and be completely fever-free. We also need the calcium numbers to stay down on their own. If all of

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This from Jack’s Mom blog: Jack has pneumonia. This is not a result of the transplant however his medication is suppressing his immune system and that could be part of the reason why the cough ended up in pneumonia. Because of the snow storm on Friday Jack was unable

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I copied this from Giovanni’s dad progress notes: When I entered Giovanni’s room I walked to his side and laid my cheek against his as he soundly slept softly breathing. As my cheek lay against his puffy cherib cheeks feeling his warmth I selfishly fed myself comfort from this

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Would you patent a gene!!??? They have: Inhibition of NF-κB activation by blockade of IKKβ-NEMO interactions at the NEMO binding domain Abstract The invention includes compositions and methods for the selective inhibition of cytokine-mediated NF-κB activation by blocking the interaction of NEMO with IκB kinase-β (IKKβ) at the NEMO

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Discovery Channel Mystery Diagnosis

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I received the following news from Rhys today. The boy who faces nine months in an air bubble It is the modern equivalent of living in a sealed plastic bubble. And it is also the best chance of survival for a desperately ill five-year-old. Rhys Harris is to spend

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