Friday, 22 April 2011 00:00
The Cooley’s Anemia Foundation (CAF), the country’s only non-profit organization dedicated solely to battling the fatal blood disorder thalassemia (a.k.a. Cooley’s anemia) has announced that a special “Care Walk” walk-a-thon will be held in Bethpage Park in Bethpage on Sunday, May 1 between 10 a.m. and 2 p.m.
CAF is debuting its “Care Walk” campaign this year. Unlike a traditional walk-a-thon, in which thousands of people gather in one place for a concentrated mass event, the Care Walk is a series of walks held across the nation. Each individual who registers for a Care Walk can decide where he or she wants to walk on May 1 and for how long.
The Bethpage Park Care Walk, which will start at the Bluebird Pavilion, is being organized by Dean Hernan, a member of the CAF Board of Directors. “The Care Walk is a unique idea that enables people to schedule a walk that fits their schedule,” says Hernan. “This convenience means more people can participate and help all those who must meet the many challenges of living with thalassemia.”
Children born with the severe form of thalassemia require lifelong blood transfusions as often as every two weeks, starting in infancy. They must also undergo a difficult daily treatment which for many involves sticking a needle in the stomach and pumping in a drug for 8-12 hours every night. In addition, complications such as diabetes, osteoporosis (beginning in teenage years), pulmonary hypertension and hepatitis are common.
Although there have been promising advances in gene therapy in recent years, a cure is still being sought.
Founded in 1954, the Cooley’s Anemia Foundation is dedicated to serving people afflicted with various forms of thalassemia, most notably the major form of this genetic blood disease, Cooley’s anemia/thalassemia major. The group’s mission is advancing the treatment and cure for this fatal blood disease, enhancing the quality of life of patients and educating the medical profession, trait carriers and the public about Cooley’s anemia/thalassemia major. CAF is a significant funder of medical research specifically related to thalassemia and its complications, contributing in this way to improving care and finding a cure. The Long Island and Suffolk chapters of the Cooley’s Anemia Foundation play an active and important role in spreading awareness of thalassemia among the people of Long Island.