SADS Foundation History
In the early 1970s, Dr. G. Michael Vincent and his associates at LDS Hospital/University of Utah in Salt Lake City began identifying, studying, and treating families affected by Long QT syndrome (LQTS), a genetic heart rhythm disorder that can cause fainting, seizures, and sudden death in otherwise healthy young people. As the team expanded family pedigrees and proactively screened relatives, they identified many individuals at risk, including members of one extraordinarily large family that became one of the world’s largest single LQTS pedigree.
As clinical experience and research contacts grew, Dr. Vincent and colleagues became increasingly concerned that too many young people were still going undiagnosed and untreated. Even as research findings emerged, awareness among clinicians and the public lagged behind, driving a shared urgency for “a better way” to disseminate information and save lives.
A major turning point came as clinical care, family-led advocacy, and genetics research began to converge. In 1985, Dr. Vincent was joined by Katherine Timothy, and together they undertook detailed phenotypic work and expanded genealogies that would help enable the discovery of the genetic basis of inherited LQTS. In 1988, they approached Dr. Raymond L. White and colleagues about finding the genetic basis of LQTS in a large family pedigree. In 1989 Dr. Mark Keating joined the University and began genetic studies that led to the first reported genetic location for LQTS in early 1991 — an early breakthrough that accelerated research worldwide.
At the same time, families living with LQTS were urgently pushing awareness forward in the public sphere, often after unimaginable losses. One of the most visible early advocates was Doris Toran Goldman, who lost two children in their twenties and devoted herself to ensuring other families wouldn’t suffer the same fate. Doris, alongside her surviving daughter, Nancy Toran Duitch, joined forces with Dr. Vincent and colleagues to form the Sudden Arrhythmia Death Syndromes (SADS) Foundation on December 12, 1991. The SADS Foundation would focus on raising awareness, educating families, and accelerating research to prevent sudden and unexpected cardiac death due to genetic heart rhythm conditions such as LQTS.
Over time, SADS has grown beyond its earliest focus on LQTS to support families affected by a wider range of inherited arrhythmia conditions — including CPVT, Brugada syndrome, ARVC (also called ACM), Short QT syndrome, Timothy syndrome, and others — while continuing to emphasize family-centered education, connection to expert care, and partnership with the medical community.
Frequently Asked Questions
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What is SADS?
SADS conditions are genetic heart conditions that can cause sudden death in young, apparently healthy, people. SADS conditions occur because the electrical system of the heart is not working properly, so that the heart beats with an abnormal rhythm.
SADS conditions include Long QT Syndrome, Catecholaminergic polymorphic ventricular tachycardia (CPVT), Brugada Syndrome, Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC), Short QT Syndrome, and Timothy Syndromes.
Warning signs of SADS conditions include family history of sudden, unexplained death under age 40, fainting or seizure during exercise, excitement or startle, and consistent or unusual chest pain and/or shortness of breath during exercise.
These conditions are treatable, and with proper treatment, people with these conditions can live normal lives.
How long has it been around?
The first documented case of Long QT syndrome was described in Leipzig by Meissner in 1856. In 1973, Dr. G. Michael Vincent and his associates at the University of Utah Hospital in Salt Lake City, Utah identified and began to study and treat several families with Long QT Syndrome (LQTS). A group of researchers headed by Dr. Michael Vincent and Dr. Mark Keating reported the first genetic linkage results in LQTS in 1991.
Which people are vulnerable to SADS? For example, athletes or people with an undiagnosed hereditary heart condition?
SADS conditions are genetic heart conditions. Because SADS conditions are passed down from parent to child, each child of an affected parent has a 50% chance of inheriting the condition. If someone is diagnosed with a SADS condition in your family, it’s important for family members to get screened as soon as possible. The good news about these conditions is that they are highly treatable, and once treated the individuals can live normal lives.
SADS Remembers Dr. Michael Vincent
The SADS Foundation sadly announces that on February 12, 2020, our founder Dr. G. Michael Vincent passed away peacefully after a life lived with humility, grace, and inspiration. We honor his service to the mission of the SADS Foundation through the momentous contributions he made in the medical field, through the care he gave to thousands of families, and the thousands of young lives that were saved. We will miss Dr. Vincent’s guidance, munificent efforts, and generous heart as we continue to bring his vision to life.
“Michael was such an important part of our pediatric EP community even though he was an adult EP. He really put LQTS “on the map” and went beyond that by founding the SADS Foundation to help support families, patients and physicians who care for patients with inherited arrhythmias. Along with researcher at the University of Utah including Mark Keating and Katherine Timothy he helped us understand the genetic nature of LQTS and opened the door for further discoveries in inherited arrhythmias. Despite his worldwide recognition and illustrious career he was a humble, incredibly kind and generous man. He really was a role model for me as to how to be successful with grace. He is the reason I became interested in this population of patients. I will miss him.”
-Dr. Susan Etheridge
“I am saddened by the loss of my good friend and colleague, Dr. Michael Vincent. Michael created and ran the SADS Foundation for many years—helping hundreds of families around the world to “live and thrive” with long QT syndrome. And he supported and trained so many physicians who care for patients with genetic arrhythmia syndromes. When he retired, he allowed me to continue and build upon his work with SADS, which was a deep honor.”
-Dr. Michael Ackerman
“one of the most gracious people I ever had the pleasure to meet and know. He made me feel like one of his own family. What a great honor for me.”
-Dr. Robert Campbell
Pioneer Scientists