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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

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

The group, led by 2 co-chairs, also reflects geographical representation (rural vs urban and provincial/regional), cultural diversity and first language (English/French). Additional considerations for research members included career stage, research focus and research/work setting, while work experience and specific skillsets were considered for community members. 

Starting in January 2018, they will spend two years considering priorities and opportunities in detecting, treating, and managing 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

Dr. 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.

Ms. 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.

Members

Barbara Bailey (Ont.): nurse practitioner, Adult Congenital Heart Disease, Toronto Congenital Cardiac Centre, Peter Munk Cardiac Centre; Toronto General Hospital, University Health Network

Dr. Alan Bell (Ont.): family physician and clinical researcher, University of Toronto and Humber River Hospital

Ms. Lori Constable-Smolcic (Ont.): registered nurse, cardiac surgery triage and database; living with complex congenital heart disease

Ms. Raman Kapoor (Alta.): registered dietitian; focus on heart health for South Asian population; living with congenital heart disease

Dr. Sandra Lauck (B.C.): nurse clinician scientist, Centre for Heart Valve Innovation, St. Paul’s Hospital, Vancouver

Dr. Andrew Mackie (Alta.): clinician scientist, pediatric cardiology, University of Alberta

Dr. Seema Mital (Ont.): head, cardiovascular research and staff cardiologist, Heart Function and Transplant, SickKids; translational researcher

Mr. Jim Orban (Ont.): president, University of Ottawa Heart Institute Foundation; former publisher, Ottawa Citizen

Dr. Philippe Pibarot (Que.): Canada Research Chair, Valvular Heart Disease, Québec Heart & Lung Institute; Laval University

Dr. Pam Ratner (B.C.): vice-provost and associate vice-president, Enrolment and Academic Facilities, and socio-behavioural epidemiology researcher, University of British Columbia

Ms. Krista Spearns (Nfld.): social worker, Government of Newfoundland and Labrador; mother of child with congenital heart disease

 

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