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Primary Immunodeficiency

The Bacteria Art Exhibition

Posted on December 8, 2007 by Andres Trevino

A gallery of art made from the patterns bacteria form with they grow in petri dishes. Link

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Dr. Orange finds relationship between NK cells and NEMO

Posted on December 4, 2007 by Andres Trevino

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 ex vivo human NK cells or…

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Stem cell hope for immune disease via BBC News

Posted on November 24, 2007 by Andres Trevino

  Common immune system disorders, such as multiple sclerosis and arthritis, could one day be treatable with bone marrow transplants, research suggests.   Currently, the procedure is reserved for life-threatening disorders because chemotherapy or radiotherapy is needed before a transplant can be done. But a protein may do the same job without dangerous side-effects, a…

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Conner’s Home!

Posted on November 20, 2007 by Andres Trevino

  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 for prepare for a bone marrow…

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The Jeffrey Modell Immunology Center at Harvard Opens

Posted on November 16, 2007 by Andres Trevino

(HealthNewsDigest.com) – Boston/New York City – On Saturday, November 17, 2007 Harvard Medical School will officially open The Jeffrey Modell Immunology Center at Harvard. This is a monumental achievement for the Jeffrey Modell Foundation (JMF), a non-profit organization established by Fred and Vicki Modell, in memory of their son, Jeffrey, who died at the age…

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Conner’s Mom AHA moment

Posted on November 12, 2007 by Andres Trevino

Conner received stem cells 87 days ago from an unrelated young woman who turned out to be a 7/8 match. It was his only chance to cure his NEMO primary immune deficiency. I took the text below from his Mom’s blog at cure4conner.org where she describes the “AHA moment” regarding transplants. What she describes is true not only…

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IDF Newsletter – What is NEMO?

Posted on November 6, 2007 by Andres Trevino

  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 modulator”, or just “NEMO.” Although the…

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IDF Newsletter – Who is Jack

Posted on November 6, 2007 by Andres Trevino

 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 Jersey, and we would like to…

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The first ever webinar about NEMO

Posted on September 28, 2007 by Andres Trevino

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 webinar lasted for 1 hour 15 minutes and…

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The Stool Scale

Posted on September 21, 2007 by Andres Trevino

Before Andy’s transplant and during transplant there was a direct relationship between happiness and the appearance of faeces.  Strange.. but that’s the way it is.  Extreme parenthood… I remember the day when I changed Andy 34 times in 24 hours. one diaper every 42 minutes. According to the chart below If he had a Type 7 it meant that we had to run to…

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