History, Vision, Mission, and Goals
History of the Foundation
In the fall of 1994, the “Toronto Star” agreed to print a family story about the sudden unexplained death of their sixteen year old son. The public response from this story was overwhelming and resulted in over a thousand calls of enquiry from other affected families across Canada.
Established in 1995, The Canadian Sudden Arrhythmia Death Syndromes (SADS) Foundation (aka The Canadian 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.
These heart rhythm disorders can be the result of cardiac electrical malfunction or by heart muscle irregularities. Frequently referred to as SADS conditions, inherited cardiac rhythm disorders are a group of diseases that can sometimes cause sudden cardiac death (SCD). A correct and early diagnosis and appropriate treatment for an inherited cardiac rhythm disorder will often result in affected people being able to lead productive lives with normal life spans.
The Canadian SADS Foundation envisions a day when:
- More young people with an unknown inherited cardiac rhythm disorder will be diagnosed correctly which will more likely ensure 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 or heart muscle abnormalities. and providing a wide-range of programs and support to these families.
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 Warning Signs” for inherited cardiac rhythm disorders are:
- Fainting (syncope) or seizure during exercise, excitement, or startle;
- Consistent or unusual chest pain and/or shortness of breath during exercise;
- 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.
Goals of the Foundation
The Canadian SADS Foundation is committed to delivering three core services:
- Patient and family support for all those who are affected by inherited cardiac rhythm disorders;
- Education and awareness of “The Warning Signs” for these disorders among health care professionals and others interact and work with our children;
- Advocacy to encourage research with the objective of improving diagnosis and treatment for these sometimes devastating abnormalities.