The Thalassemia Foundation was founded in 1982 by Angela Polsinelli, the parent of a patient, with the help of a few other parents and patients. It was created because there was a large number of thalassemia patients in the Toronto area, but there was no structured association available. Dr. Freedman asked Angela if she would start an organization, and she agreed. The Cooley’s Anemia Foundation in New York City was instrumental in teaching Angela the ropes in regards to setting up an organization in Ontario.
The original name for the Foundation was the Ontario Thalassemia Association. The Association made its own guidelines and objectives. It became legally incorporated on December 13, 1988, under the name Ontario Thalassemia Foundation.
On May 10, 1999, the Foundation’s name was changed to the Thalassemia Foundation of Canada to better reflect its Canada-wide membership and the work it does on behalf of thalassemia patients at a national level. The Foundation communicates with the thalassemia associations in Quebec and British Columbia and has connected with patients in Alberta, Manitoba and Nova Scotia.
The Thalassemia Foundation originally began as a support group for parents and patients. Its organizers wanted to teach parents how to administer Desferal to their kids. For young adults, the Foundation would allow patients to support one another. As the Foundation gathered more members, it was able to start fundraising, causing its focus to broaden. It became possible for the Foundation to gather money for research, and meeting the financial needs of patients, by providing Desferal pumps to those in greatest need.
The Foundation has been very successful so far. Over the years, the Thalassemia Foundation of Canada has grown to become a national organization and is now able to devote nearly one hundred thousand dollars per year to medical grants for research. Each year in February, the Thalassemia Foundation of Canada hosts an annual Valentine’s Dinner and Dance Fundraiser. This event is held to raise awareness and much-needed funds for the Thalassemia Foundation of Canada. The funds raised are completely dedicated to education, research, and provide necessary support for patients suffering from thalassemia in Canada. Funds collected by the Thalassemia Foundation of Canada have made it possible for funding grants to be endowed for scientific research in the field of hemoglobinopathies and thalassemia.
It has also established a distinguished medical advisory committee headed by Dr. Douglas Templeton with the University of Toronto, and has become a member of Thalassaemia International Federation (TIF). It has been invited to sit on many Canadian committees and members have been invited to present at numerous national and international conferences.