In the spring of 2004, a group of us met to discuss how we could help to support our fellow adult congenital heart patients at Toronto GeneralHospital's Congenital Cardiac Centre for Adults (TCCCA). While the center continues to offer world-class medical care, we were encouraged to form a patient alliance to help secure the support and resources we need to extend and improve the quality of our lives.
One of our immediate goals is to raise the profile of adult congenital heart disease in Canada. We want to ensure we receive the same excellent standard of care as we have had since childhood, and at the same level as non-congenital cardiac patients.
The CCHA has the enthusiastic support of the Canadian Adult Congenital Heart Network, a professional organization made up of Canadian congenital heart disease professionals. They have supported CCHA from its inception in many ways, including help with start-up funding.
Other important supporters include Dr. Gary Webb, former TCCCA Director; Dr. Erwin Oechslin, Director of the TCCCA; Dr. Bill Williams, Emeritus Professor of Surgery at the Hospital for Sick Children and Toronto General Hospital; Dr. Jack Colman, Director of Clinical Service for the Adult Congenital Heart Disease Program; Dr. Andrew Redington, Chief of the Division of Cardiology at the Hospital for Sick Children; Dr. Ariane Marelli, Director of the McGill Adult Unit for Congenital Heart Disease Excellence at McGill University; the Heart & Stroke Foundation of Ontario, and many others.
We are all very excited to be a part of this grassroots organization. As patients, we all have come so far - most of us are living legacies. We recognize that the effects of congenital heart disease extend beyond the patient, and so we will strive to be an alliance of patients as well as our families, friends and loved-ones.
Now we need to work hard to ensure that we continue to get the best care possible, not only for ourselves, but also for future generations of patients and their families.
We invite you to join up as a member and get involved.
"Never doubt that a small group of thoughtful, committed people can change the world.
Indeed, it's the only thing that ever has."
Indeed, it's the only thing that ever has."
-Margaret Mead
