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Fixing broken hearts

Introducing the Heart & Stroke structural heart disease council

Structural heart disease refers to the abnormalities of the heart’s structure, including its valves, walls, muscles or blood vessels near the heart. It can be present at birth (congenital) or acquired after birth through infection, wear and tear or other factors.

Structural heart disease requires lifelong care. People living with heart defects and their families need support throughout every age and stage of their life, often requiring ongoing medical care and surgical procedures.

Sixty years ago, fewer than 20% of infants born with complex heart defects reached adulthood. Today, more than 90% do.  While we’ve made incredible advances in this area, there is more to do. 

1 in 100

Proportion of Canadian babies born with structural heart disease.

That’s why Heart & Stroke has identified structural heart disease as one of six disease areas where we see the greatest potential for impact (scroll down to learn more). By supporting the development of new solutions to identify structural heart disease earlier and advance treatments such as surgical procedures and pharmaceutical interventions, we’ll give Canadian families more precious moments. 

Council will guide action

We have established the Heart & Stroke structural heart disease council, a team of 10-12 members — half researchers and half community members. The community members bring a range of backgrounds including lived experience of structural heart disease (either themselves or in a loved one), policy, philanthropy, technology, health care and more. 

Starting in late 2017, they will spend the next two years considering priorities and opportunities in preventing and treating structural heart disease. 

Their knowledge and input will guide Heart & Stroke in determining how we can deliver the greatest impact for Canadians living with structural heart disease, and their families. 

Meet our council co-chairs

Ariane Marelli, research co-chair: Dr. Ariane Marelli is cardiovascular program leader at the McGill University Health Centre’s Research Institute and associate director of academic affairs for cardiology at the McGill University Health Centre. She founded and directs the McGill Adult Unit for Congenital Heart Disease that follows over 3,000 people with these conditions. 

Ariane is an international leader in the field of structural heart disease. She is the only Canadian to serve on the Epidemiology and Prevention Council of the American Heart Association, and is president of the Canadian Adult Congenital Heart Network. She also led the creation of the Quebec congenital heart disease database, one of the largest of its kind worldwide. We are so fortunate to have Ariane’s extensive knowledge and expertise on this council.

Shelagh Ross, community co-chair: Shelagh Ross was born in the early 1960s with tetralogy of Fallot, one of the most common congenital heart defects. She underwent heart surgeries at ages 2 and 8, and again in 1995 to have her pulmonary valve replaced.

Shelagh helped to form and lead the Canadian Congenital Heart Alliance (CCHA), with the goal of improving quality of life and health outcomes for people with congenital heart defects. CCHA earned recognition and respect from families and healthcare professionals worldwide, in large part due to Shelagh’s determination, success at relationship-building and hard work — skills she brings to the Heart & Stroke structural heart disease council.

About Heart & Stroke mission critical areas

Heart & Stroke has adopted a new framework that will drive progress in what we are calling mission critical areas or MCAs. These are the six heart and stroke disease states that together represent the biggest burden — on Canadians’ health, on the economy and on society. 

The MCAs are not the only areas where Heart & Stroke works, but they reflect where we believe we can have the greatest impact. The six MCAs are:

The work of our six MCA councils will also feed into a strategic planning process underway at Heart & Stroke, to determine our direction as an organization.

More information