This blog will be a place for the Cooley’s Anemia Foundation to share information from and thoughts of invited members of the thalassemia community.
June 5, 2013 – Help the Cooley’s Anemia Foundation and the New York Mets hit one out of the field for those with thalassemia! On August 23, it’s Cooley’s Anemia Night at Citi Field in Queens, NY as the Amazin Mets take on the Detroit Tigers! In an effort to create awareness about Cooley’s anemia, […]
June 3, 2013 – The Spring 2013 issue of Lifeline, CAF’s newsletter, is now available for downloading. You can download the issue by clicking here. (Adobe Reader is required.)
May 31, 2013 – This year’s CAF Patient~Family Conference is June 28-30 in Philadelphia. (Click here for details.) Below, Jospehine Bila talks about her reaction to last year’s Conference, which was the first she attended. CAF: Why do you think these Patient~Family Conferences are valuable? Jo: In the past, I was very apprehensive about identifying myself […]
May 31, 2013 – CAF is proud to be part of the international thalassemia community and of the Thalassaemia International Federation (TIF). While thalassemia affects a relatively small population here in the United States, its global impact is substantial: In some parts of the world, carrier rates can be astonishingly high, with some regions of […]
May 28, 2013 – CAF has long been a champion of medical research which explores potential curative approaches to thalassemia. The Foundation has been a fierce, proactive advocate with government agencies and private sources on the need for increased funding for gene therapy and other stem cell-based initiatives. Our voice has been one of the […]
May 21, 2013 – The 2013 Patient~Family Conference is coming (June 28-30) in Philadelphia. This is an incredible opportunity for thalassemia patients and family members to get together, hear a lot of important medical information, ask questions and have the chance to socialize. You really don’t want to miss it! Here’s a reminder: CAF has […]
May 20, 2013 – We like to make people aware of articles or stories about thalassemia that appear in newspapers or in other media. On May 18, the Pioneer Press ran one that focuses on Trinayani Christiansen, a 24-year-old thalassemia patient who was adopted from India as a child and has lived in the United […]
May 16, 2013 – Quick quiz: This year’s CAF Patient~Family Conference is taking place: A. In Philadelphia, PA. B. June 28- 30. C. In conjunction with CAF’s annual Board Meeting. D. All of the above. Okay, that was an easy one; it’s D, all of the above, of course. Anyway, in anticipation of this year’s […]
May 15, 2013 – People with thalassemia may have low bone mass issues (including osteoporosis). Below is information on what a T-score, which is used in defining low bone mass issues, is. For more information about low bone mass in thalassemia, click here.
May 14, 2013 – This year’s CAF Patient~Family Conference is June 28-30 in Philadelphia. (Click here for details.) What’s the Conference like? We asked Trinayani Christiansen, who attended last year’s Conference, a few questions about her experience. CAF: How many Patient-Family Conferences have you attended? Trinayani: Last summer (2012) was my first Conference. I was […]
