August 2, 2012 – The Cooley’s Anemia Foundation is allocating $317,500 in medical research funding this year to a range of important and exciting projects. This funding represents one new and two renewed CAF Medical Fellowships; two new and two delayed clinical research grants; and a new gene therapy research grant. Funding medical research has long been […]
July 21, 2012 We are very sad to report that Gargi Pahuja, a long time member of the CAF Board, a former President of TAG, a former Patient Services Director for CAF, and a former Board member of TIF (Thalassaemia International Federation) passed away on Saturday, July 21, 2012. Gargi was a remarkable person who […]
Below are some of the thoughts about and memories of Gargi Pahuja, a leading light in the thalassemia community, who passed away on July 21, 2012. “The global thalassemia community lost an eloquent voice. Gargi was the most provocative and productive advocate that I have ever known. She did everything to make life better for […]
July17, 2012 Memorial Sloan-Kettering Cancer Center will begin evaluating a new stem-cell-based gene therapy for patients with the inherited blood disorder beta (β)-thalassemia. The clinical trial is the first to receive US Food and Drug Administration approval to treat this disease with genetically engineered cells and is a culmination of more than two decades of […]
June 12, 2012 – Robert Mannino knows more about blood transfusions than most people. Diagnosed with thalassemia when he was just six months old, he’s spent much of his life in clinics, hooked up to transfusion machines for treatment of the disorder Now 20 years old and a junior at the Georgia Institute of Technology […]
April 6, 2012 – My name is Aaron Cheng, and I’ve just completed my first semester of college at Harvard University. I don’t remember when I was diagnosed with beta thalassemia major, which is also known as Cooley’s Anemia, but my parents tell me it was when I was around one year old. We were […]
March 15, 2012 – Shire plc, the global specialty biopharmaceutical company, announces that it has signed an agreement to acquire FerroKin BioSciences, Inc., for an upfront payment of $100 million, payable in cash at closing, plus potential post-closing milestone payments of up to $225 million, depending upon the achievement of certain clinical development, regulatory and […]
February, 2012 – Rahul Kapoor is the sole member of his immediate family with thalassemia – but his entire family shoulders the struggle. They’ve rallied around him and supported one another since he was diagnosed with the blood disorder when he was four years old. Now nineteen, Rahul is a sophomore at the University of […]
February 1, 2012 – CAF Medical Advisory Board Chair Ellis Neufeld, MD, answers some of the questions which have been forwarded to CAF by individuals with thalassemia intermedia. CAF: Why don’t intermedias qualify for bone marrow transplants, even if the diagnosis changes to major? EN: Bone marrow transplantation can be a dangerous endeavor, and the […]
December 16, 2011 – Results from THALASSA, a placebo-controlled study examining the benefit of iron chelation with Exjade® (deferasirox) in patients with non-transfusion-dependent thalassemia (NTDT), were presented on December 13 at the 53rd Annual Meeting of the American Society of Hematology in San Diego. “Patients with NTDT” could include some individuals with beta thalassemia intermedia, […]
