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.
February 23, 2015 – On March 8, Joelle Zarcone will be running in the San Diego Half Marathon to raise money for CAF. Below, CAF talks with Joelle, a person with thalassemia, about her decision to participate in this endurance event. CAF: How did you decide to participate in the San Diego Half Marathon? Joelle: […]
February 12, 2015 – The thalassemia community has a new app to assist them with the management of their disorder: thalTracker, developed at the University Health Network. This app is available for free download at through the Apple App Store. The purpose of the App is to support the user in tracking levels of their […]
February 2, 2015 – Thalassaemia International Federation ( TIF) has announced a new thalassemia fellowship opportunity, established in honor of the late Renzo Galanello, Professor of Pediatrics at the University of Cagliari, Italy, and Director of the 2nd Pediatric Clinic, Department of Biomedical Sciences and Biotechnologies, Ospedale Regionale per le Microcitemie. Dr. Galanello was a respected and […]
February 2, 2015 – Thalassaemia International Federation (TIF has announced its 2nd International Photography Contest 2015, which is launched with the aim of creating awareness about thalassemia, in the context of the International Thalassemia Day (May 8). Participation in this contest is open for all ages, and all countries across the world. Deadline The deadline for the competition […]
January 27, 2015 – Registration for the Cooley’s Anemia Foundation’s 2015 Care Walk Is Now Open! www.thalassemia.org/CareWalk2015 Care Walk is the Cooley’s Anemia Foundation’s annual fundraising event and opportunity to bring together the thalassemia community and its supporters around the country. The Care Walk on May 3, 2015 will raise funds to fight thalassemia, […]
January 22, 2015 – A new trial site for the Northstar Study of gene therapy in patients with beta-thalassemia major has opened up in Los Angeles, CA. This trial site is in addition to the ongoing trial sites located in Chicago, Philadelphia, and Oakland. To determine whether you might be eligible to participate in the […]
January 12, 2015 – We would like to offer this advice from our Medical Advisory Board Chair, Dr. Ellis Neufeld, concerning some situations in which one may need to consider temporarily halting chelation therapy while treating another issue: 1. As a general rule, patients should always halt chelators (any chelator) temporarily for fever, and call […]
January 12, 2015 – 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 […]
January 12, 2015 – Residents of Staten Island, NY: Our Lady of Pity Church and the Staten Island Chapter of Cooley’s Anemia Foundation are hosting their annual winter blood drive on Sunday, January 25, from 8:15 a.m. to 2:00 p.m. Please make a special effort to come and donate blood if you are able! The […]
January 5, 2015 – The new year is well and truly begun and the Cooley’s Anemia Foundation has made its resolutions for 2015, the biggest one being: We resolve to do everything we can to make a difference in the thalassemia community. With that in mind, we want to take this opportunity of the start […]
