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NEMO Gene
Making a book
USA Today – Embryo genetic screening controversial – and successful
Article about Molly & Adam Nash with quotes Oleg Verlinsky who is now running the Reroductive Genetics Institute in Chicago after his father Yury passed away last June. Yury gave us a dicount to do the PGD lab setup for NEMO in his Lab. USA Today article here.
You can help Jackson Merriman who has NEMO and is having a bone marrow stem cell transplant
Jackson is having a transplant. Jackson Merriman is the son of Doug and Melissa Merriman. He was born NEMO. The only hope for a cure for the immune deficiency is a bone marrow transplant which Jackson will be undergoing in the spring in Denver, Colorado. The family has turned to Children’s Organ Transplant Association(COTA) to…
Immunology expert at Children’s Hospital receives APS prize for patient-oriented research
Organization for ‘promoting useful knowledge’ honors Dr. Jordan Orange IMAGE: Jordan S. Orange, M.D., Ph.D., is a pediatric immunologist at the Children’s Hospital of Philadelphia. Click here for more information. A pediatric immunologist at The Children’s Hospital of Philadelphia has received a prestigious annual award from the American Philosophical Society, an organization founded in 1743 by…
NECN interview – CHB Orphan disease center
(Ally Donnelly, NECN: Boston, MA) – A Boston hospital has received a grant to establish the world’s first-ever center to study orphan diseases. An orphan disease is any disease or disorder affecting less than 200,000 people in the United States. Because the disorders affect so few, researchers have a difficult time getting government or private…
Reasearch from Orangelab. Jordan Orange & Eric Hanson, et. al.
Life saving research from Orangelab was published at the Journal of Allergy and Clinical Immunology this month. They studied 72 individuals with NEMO. Thirty-six percent of individuals died at a mean age of 6.4 years. Thirty-two different NEMO mutations were identified. 86% with serious pyogenic infection, 39% with mycobacterial infection, 19% with serious viral infection,…
Prayers for Justin
From Justin’s Mom: Please continue to pray for Justin. That he will not find GVHD, and no more pain. Who is Justin?Justin Cilia is an 8 year old boy. Who underwent transplant on June 22nd. He has been sick since he was six weeks old. He has had a few very serious infections. He has…
Simon & JT
NEMO – 72 cases worldwide From Simon’s Mom blog: This is no way for a 3 year old active boy to live. It pains our hearts. Our docs are working with our Washington (NIH) and Philadelphia (NEMO) expert docs to see if there is something else or another drug that might do less harm and…
Rhys 365 days later
Taken rom Rhys Dad Blog. I knew Ward 23 Newcastle was the ‘last chance saloon’ as it is for all those kids. And was not a dignified death, however where there is life there is hope, and I believed in the Prof and Mario,, but most of all I believed in Rhys.So we proceeded, I…