ICF National Charity: Cooley’s Anemia / Thalassemia

An Overview

In 1925, Dr. Thomas Cooley first described thalassemia in Italian children with severe anemia, an enlarged liver and spleen, and changes in bone formation. Several years later, Dr. Whipple named the disease “thalassa anaemia” or “anemia by the sea”, because of its link to the Mediterranean region. The name later evolved to Thalassemia. With the large immigration of people of predominantly Mediterranean ancestry to North America, the devastating effects of this disease became known to the affected communities and their providers. Seemingly healthy newborns became pale, sickly, with most dying by three years of age.

Largely due to strong support from Italian advocate groups, major advances have occurred in the treatment and prevention of thalassemia. The initiation of monthly blood transfusion enabled children to live relatively healthy lives until their teen years when they began succumbing to iron poisoning caused from the routine blood transfusions. By the late 1970’s a medication was developed called Desferal, which is a medication that removes excess iron from the body. Unfortunately, Desferal needs to be administered through a needle infusion 12-15 hours every day. Fortunately, though, with adherence to an intense medical regimen patients are surviving and often thriving into their adult years.

Largely due to strong support from Italian advocate groups, major advances have occurred in the treatment and prevention of thalassemia.
Quality of life now has become a major focus for patients and their families. People with thalassemia require specialized care needed to prevent complications. Each patient must be followed by a hematologist, endocrinologist, cardiologist, hepatologist, and a primary care physician. Nutrition, vision and hearing also need to be followed. Patients require access to specialized blood transfusions in order to avoid transfusion reactions. In the past, in order to monitor their iron levels, regular liver biopsies were necessary. However, iron measurement is now achieved through non-invasive MRI technology developed by Dr. Thomas Coates and Dr. John Wood at Children’s Hospital Los Angeles (CHLA). Marriage, fertility, employment and medical insurance are issues adults with thalassemia now face.

Specialized thalassemia programs were initially developed in the North East, especially New York, because of concentration of Italian communities. Now, with migration to the West Coast and immigration, thalassemia is now more prevalent across the U.S., especially in California. State newborn screening programs now diagnose thalassemia (and many other diseases) at birth, rather than waiting for symptoms to occur. Currently, there are six specialty centers for thalassemia in North America; the one at Children’s Hospital Los Angeles being the national charity for the ICF. To date, the ICF has raised over 2 million dollars for Thalassemia.

Despite the increase in numbers, the needs of patients in general are not adequately being addressed by government and many health care providers do not have knowledge of Thalassemia. Thalassemia care costs more than $100,000 per year. The special services needed for patients are often not available; therefore, it is highly recommended for patients to be seen at least once a year at a specialty center. There is no universal cure for Thalassemia; however a bone marrow or stem cell transplant is a cure for some patients. It is recommended that a patient needs an exact match (a sibling) and it is a very high risk procedure. Gene therapy studies are being conducted by companies such as blue bird biotech and offer promise of a cure.

In 2005, the first oral pill to remove iron was approved by the FDA. A second oral pill was approved in 2011. For many patients, these oral medications take the place of Desferal, however they come with a long list of side effects. More research is being done to develop new medications.

The Painted Turtle Camp

The Painted Turtle is a beautiful 173-acre camp and family-care center in Lake Hughes, California that provides a year-round, life-changing environment and authentic camp experience for children with chronic and life-threatening illnesses, including transfusion dependent thalassemia. The camp supports children’s medical needs, inspires them to reach beyond their illnesses, and provides care, education and respite for their families.

The Painted Turtle was founded in 1999, opened its gates in 2004 and operates in collaboration with a group of 16 California nonprofit children’s hospitals, the Founding Partner Hospitals. It’s also a member of the Serious Fun Camps founded by actor Paul Newman. Serious Fun Camps are considered the finest multi-disease medical camps and family-care centers in the world. They have served more than 100,000 seriously ill children. Each camp is responsible for its own fundraising and has its own board of directors. In 2006, the Painted Turtle was accredited by the American Camp Association.

Many Thalassemia Patients have attended the Painted Turtle Camp, bringing them a tremendous amount of happiness, confidence and joy.

While the Painted Turtle Camp is free to campers, many patients are unable to afford transportation to camp. This is where Italian Catholic Federation funds are integral. Whether it is a plane ticket or fuel, any child who wants to attend camp can attend camp.

To learn more about Painted Turtle Camp:

If you would like more information about Cooley’s Anemia / Thalassemia, please contact:

Laurice Levine, MA, CCLS
Medical Consultant/Thalassemia Outreach
Email: LLevine430@aol.com
Find Laurice on facebook at Laurice M. Levine


The Italian Catholic Federation (ICF) is a family-oriented, non-profit fraternal organization dedicated to promoting activities that build faith and family spirit and bring men, women and children of all ages together. By joining a local branch, ICF members share their culture, heritage and religious beliefs. We believe that together we accomplish more than one can alone. We are active in various cultural events throughout the country, support our local parishes, and provide various charities with financial and other support.