Established in 1995, The Canadian Sudden Arrhythmia Death Syndromes (SADS) Foundation, a registered Canadian charity, is the only patient advocacy group in Canada dedicated to supporting patients and families affected by inherited cardiac rhythm disorders.
Often referred to as SADS conditions, inherited cardiac rhythm disorders are a group of diseases that affect the heart and can sometimes cause sudden cardiac death (SCD). A correct and early diagnosis and appropriate treatment for an inherited cardiac rhythm disorder will most often result in affected people being able to lead productive lives with normal life spans.
The Canadian SADS Foundation is also committed to raising awareness about “The Warning Signs” for these potentially devastating disorders. Ongoing awareness is essential to prevent the deaths of an estimated 700 children and young people who die from a SADS condition each year in Canada. Creating and sustaining awareness of SCD among medical professionals is also an integral part of the Foundation’s work.
The Canadian SADS Foundation envisions a day when:
More young people with an unknown inherited cardiac rhythm disorder will be diagnosed correctly thus ensuring they receive early and effective medical treatment.
Universal knowledge of “The Warning Signs” will prevent hundreds of unnecessary deaths each year from an unknown inherited cardiac rhythm disorder.
The Foundation will continue to be viewed as a unique and respected Canadian patient advocacy group and be recognized as the Canadian source for patient support and information about inherited cardiac rhythm disorders.
The Canadian SADS Foundation is committed to saving the lives of children and young adults who are genetically predisposed to sudden death due to heart rhythm abnormalities, and to providing a wide range of programs and support to these families.
The Foundation’s programs focus on promoting awareness of the “The Warning Signs” for inherited cardiac rhythm disorders, which are:
Fainting (syncope) or seizure during physical activity.
Fainting (syncope) or seizure resulting from emotional excitement, emotional distress, or startle.
A family history of unexpected sudden death during physical activity or during a seizure, or any other unexplained sudden death of an otherwise healthy young person.
The Core Values of the Canadian SADS Foundation include:
Remaining available and responsive to the needs and expectations of the patients and families we serve.
Conducting our affairs in a manner that fosters an image of professionalism and ethical regard for the roles of all those who work towards preventing sudden cardiac death in children, youth and young adults.
Continuing to work collaboratively with all stakeholders: affected families, physicians, researchers, and affiliated support groups to achieve our goals to prevent sudden cardiac death in children, youth, and young adults.
Key Accomplishments to Date
Developing and distributing Disease Information Booklets, vetted by leading Canadian arrhythmia specialists, to affected patients and families across Canada.
Producing several Educational Videos and a Public Service Announcement (PSA) to raise awareness of “The Warning Signs”. These videos are being used by EMS Services, amateur sports groups and school boards as a training and awareness tool.
Facilitating regional conferences for patients and families across the country (including an International SADS Conference in Toronto in 2017) with current medical information delivered by leading Canadian and international electrophysiologists, genetics counsellors and other pertinent health care providers.
Earning a reputation as a respected source for information and guidance by patients, the medical community, the media and the public in general.
Demonstrating the ability to effectively represent the best interests of Canadian families affected by SADS across the Country (both English/French).
Board of Directors
Robert Boudreau, ACP
Director, Special Projects
Spruce Grove, AB