I heard about Giovanni in the news a couple of weeks ago.. And I received an email today from Michael Guglielmo, the father of Baby Giovanni who was just diagnosed with NEMO yesterday. We talked on the phone, he’s looking for information about NEMO, he said he’s had a hard time finding information about the…
NEMO Gene
cure4treebeard.org
Go Jacob!! www.cure4treebeard.org Jacob Treebeard Brown was born on August 18, 2003. Shortly after birth he was diagnosed with a very rare genetic condition called Ectodermal Dysplasia with Immunodeficiencies, also referred to as NEMO. For the past three years, Jacob has been receiving daily antibiotic treatments, IVIG therapy and has led a restricted life away…
Prayers for Simon
Prayers for Simon who will be admitted for a second bone marrow stem cell transplant. Marriana his sister will be his donor. More details at his website www.cure4simon.org GO SIMON!
Cure 4 Rhys
Kevin Harris from Wales, England emailed me last week telling me that his son Rhys has NEMO. I created a website (www.cure4rhys.org) for Rhys. Heres the introduction: Rhys got diagnosed NEMO around about April last year. He has always been back and forth hospital since he was nine months old, he got meningitus which caused…
Happy Birthday SIMON!
Expect miracles! And here is Simon’s webpage and BLOG. Visit www.cure4simon.org!
Recent citations to Dr. Orange’s article about NEMO
ADAP is dispensable for NK cell development and function Fostel, L. V., Dluzniewska, J., Shimizu, Y., Burbach, B. J., Peterson, E. J. Int Immunol 2006 18: p. 1305-1314 X-linked susceptibility to mycobacteria is caused by mutations in NEMO impairing CD40-dependent IL-12 production Filipe-Santos, O., Bustamante, J., Haverkamp, M. H., Vinolo, E., Ku, C.-L., Puel, A.,…
Orange Lab making headway on NEMO projects!
Dr. Jordan S. Orange said today, The lab is very busy – Making some headway on the NEMO projects. We have successfully subcloned a number of different NEMO mutations found in disease to try and learn more about how they specifically impair NF-kB function. More about Orange Lab here.
French report successful NEMO stem cell transplant
From the Pediatrics Journal, published today: Successful Allogeneic Hemopoietic Stem Cell Transplantation in a Child Who Had Anhidrotic Ectodermal Dysplasia With Immunodeficiency Sophie Dupuis-Girod, MDa,b, Caterina Cancrini, MD, PhDc, Françoise Le Deist , MD, PhDd,1, Paolo Palma, MDc, Christine Bodemer, MDe, Anne Puel, PhDf, Susanna Livadiotti, MDc, Capucine Picard, MDa, Xavier Bossuyt, MD, PhDg, Paolo…
Cure 4 Cooper – Meet Cooper the Trooper!
Meet “Cooper the Trooper”. Cooper had NEMO deficiency and was transplanted May 2nd, 2006 with stem cells from his Dad. Read Cooper the Trooper blog here. Via Flora Bergeron.
NEMO Awareness
Jack will be on TV! More about Jack here. Discovery Health Channel / Mystery Diagnosis next Monday June 12, 2006. Program Name: Discovery Channel Mystery Diagnosis The Man with Rocks in His Chest Charlotte and Roy Hagelin are overjoyed when they give birth to their second child Jack. But just two weeks after his birth,…