Blog

Welcome to the Cooley’s Anemia Foundation blog!

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.


AHEPA Chapter Makes Donation to CAF

January 4, 2015 – CAF is pleased to announce that the Board of the William G. Helis Chapter 310 Order of AHEPA Charitable Foundation has made a generous $1,000 donation to CAF to help further our Foundation’s mission and goals. AHEPA is the American Hellenic Educational Progressive Association, a national organization dedicated to promoting Hellenism, Education, […]

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Chicago News Channel Airs Story on Gene Therapy for Thalassemia

December 30, 2014 – WGN-TV in Chicago aired a story tonight on a thalassemia patient who has undergone a gene replacement therapy process. The clip and accompanying story can be accessed by clicking here. The Cooley’s Anemia Foundation is thrilled that progress is being made in the area of gene therapy and gene editing for thalassemia. […]

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CAF Applauds Advances in Thalassemia Reported at Annual Hematology Meeting

December 11, 2014 – Exciting data from studies looking at new treatments for thalassemia presented at the annual meeting of the American Society of Hematology builds upon science supported by the Cooley’s Anemia Foundation and gives hope for the development of significant new treatments for the genetic blood disorder known as thalassemia. Two of the […]

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Cooley’s Anemia Advocacy Forum Update: December 8

December 8, 2014 – The Cooley’s Anemia Advocacy Forum (CAAF) is a Cooley’s Anemia Foundation project aimed at helping thalassemia patients and families learn how to make their voices heard on federal issues of importance to the thalassemia community. (A brochure about CAAF can be downloaded by clicking here.) Following is a report from Lyle Dennis and […]

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Patient to Tweet About Tranfusions on December 3

December 1, 2014 – Alicia Somma, a member of the thalassemia community, will tweet about the transfusion experience on CAF’s Twitter account (@cooleysanemia) on Wednesday, December 3. CAF asked Alicia to tweet throughout the day as she gets one of her regular transfusions, in order to let people have a better idea of what is […]

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TIF Launches “ThaliMe” App for Thalassemia Patients

November 25, 2014 – The Thalassemia International Federation (TIF) is taking on a new project to develop and deploy an innovative mobile program to greatly aid and improve the lives of people living with thalassemia. The envisioned program, delivered via mobile app, has the potential to reach millions of people around the world living with this […]

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Blood Q&A with Dr. Eldad Hod

  November 19, 2014 – CAF periodically receives questions from patients on a wide range of topics related to thalassemia and its treatment. We have shared a few of these questions relating to blood issues with Eldad A. Hod, MD, of Columbia University/New York-Presbyterian. We thank Dr. Hod for sharing his expertise with us and with […]

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Cooley’s Anemia Advocacy Forum Update: November 18

November 18, 2014 – The Cooley’s Anemia Advocacy Forum (CAAF) is a Cooley’s Anemia Foundation project aimed at helping thalassemia patients and families learn how to make their voices heard on federal issues of importance to the thalassemia community. (A brochure about CAAF can be downloaded by clicking here.) Following is a report from Lyle Dennis […]

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CAF Announces Recipients of Distinguished Scholar Award

November 17, 2014 – The Cooley’s Anemia Foundation is pleased to announce that Robert Mannino and Grace Tsai have been named recipients of the first CAF-ApoPharma Distinguished Scholar Award. The Award is presented to U.S. individuals with a clinically significant form of thalassemia who have chosen to pursue postgraduate doctoral level studies in medicine or […]

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