Amyloid Program of Calgary a national leader

Seven years ago, family physician Dr. John Pasternak, MD, sat alone in his clinic office, staring at test results that changed everything.

“I hung my head and thought, ‘now what?’” he recalls. He had just been diagnosed with cardiac amyloidosis—a rare and progressive disease that he hadn’t even known he had. He was told he had only five years to live.

The news was a shock. Pasternak had only recently started experiencing symptoms of heart failure. Like many patients with amyloidosis, his condition had gone unnoticed for some time.

In the months that followed, he checked off a list of bucket-list dreams—golfing at St. Andrews among them—and tried to come to terms with a shortened future.

But then came a call that changed his path.

“It brought tears to my eyes,” he says. 

Dr. Nowell Fine, MD, his amyloidosis specialist, was calling to offer him a place in a new clinical trial for Tafamidis, a drug designed to halt the progression of the disease.

“Sign me up,” Pasternak replied without hesitation.

Today, his condition is stable, and he is enjoying a life filled with travel, golf, family and friends.

 “I have a great quality of life and real hope for the future,” he says.

Stories like Pasternak’s underscore the importance of timely diagnosis, access to cutting-edge treatments and coordinated care—pillars of the Libin Cardiovascular Institute’s Amyloidosis Program of Calgary (APC).

Led by Libin Cardiovascular Institute member Dr. Fine, the APC was established in 2021 and has quickly become a nationally recognized leader in amyloid research, education and care. The program combines a specialized clinical service with a research hub and the country’s first dedicated amyloidosis fellowship program.

“Our goal is to ensure no patient goes undiagnosed or untreated because of a lack of awareness or access,” says Fine.

Cardiac amyloidosis affects roughly 10 in every million Canadians. It occurs when abnormal protein deposits build up in the heart, leading to stiffening and heart failure. Because it mimics more common conditions, diagnosis can be delayed—something APC is working hard to change.

By developing and leading initiatives like the Canadian Registry for Amyloidosis Research and the Alberta Amyloid Working Group, APC is improving how patients are diagnosed and treated. The program also helped establish the Canadian Amyloidosis Society, chaired by Fine, and launched Amyloid Day, now the Canadian Amyloidosis Summit, which is advancing education, awareness and care quality at a national level.

“None of this would be possible without the support of our patients,” says Fine. “Their participation in clinical trials and their willingness to share their perspectives are driving real progress.”

For Pasternak, that progress is personal. He knows how different his story might have been without a timely diagnosis and access to treatment—and he’s hopeful for the next generation of patients.

“Ten years ago, this outcome wouldn’t have been possible,” he says. “It has been a very positive experience to be involved with the great team in Calgary.”

Learn how you can support the Libin Cardiovascular Institute's work here.