History of SADS
SADS Programs:      Awareness           Support           Education          Advocacy
SADS Board of Directors - Board Biographies
SADS Scientific Advisors
Contact SADS Staff - Staff Biographies

MISSION
To save the lives and support the families of children & young adults who are genetically predisposed to sudden death due to heart rhythm abnormalities.

GOALS
1. General Awareness/Prevention: Proactively increase the general public's knowledge of the warning signs of heart rhythm abnormalities that can cause sudden death in the young.

2. Family Support: To provide information, resources, and support to assist patients and families to make informed medical decisions and to live with the challenges of these conditions.

3. Education-professionals: To facilitate early diagnosis and treatment of heart rhythm abnormalities by implementing strategies to ensure that healthcare providers have all available current and relevant information.

4. Advocacy: To encourage research, to advocate for nondiscriminatory treatment, and to support efforts that will improve the quality of life for patients with heart rhythm abnormalities.

The SADS Foundation is committed to supporting families and individuals with genetically mediated cardiac arrhythmias through education, research, and advocacy.

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History of the SADS Foundation

In the early 1970s, Dr. G. Michael Vincent and his associates at the LDS Hospital/University of Utah in Salt Lake City, Utah, identified and began to study and treat several families with the long QT syndrome (LQTS), a genetic cardiac disorder than can cause sudden death in young people. Dr. Vincent's team actively expanded the family pedigrees and prospectively screened family members for LQTS. With this approach, many LQTS patients were identified. One family was particularly large and became the world's largest single LQTS pedigree.

As Dr. Vincent's research team's experience and contacts grew, they were dismayed and frustrated by the number of young people with LQTS who were undiagnosed and untreated, and at risk for dying of this disorder. Despite research findings and medical publications, it appeared that too few physicians were familiar with or tested for LQTS. Dr. Vincent stated "there must be 'a better way' to spread information about LQTS, and save the lives of these children and young adults".

In 1988 Dr. Vincent approached his genetics colleagues, led by Dr. Ray White, at the University of Utah, and asked if they would be interested in attempting to find the genetic abnormality in his large LQTS family. Of course they were enthusiastic to work on such a large and extensive pedigree. In 1989 Dr. Mark Keating joined the faculty at the University and began the genetic studies, and in early 1991 reported the genetic location for the LQTS gene to be on chromosome 11. This was the first genetic discovery in the Long QT Syndrome, and the report caused a great deal of excitement and interest in both the medical and the lay communities.

Seeing "the better way" to disseminate and educate, the Sudden Arrhythmia Death Syndromes (SADS) Foundation, a nonprofit 501(c)(3) charitable organization, was established on December 12, 1991 by Dr. Vincent and several dedicated colleagues and LQTS family members, for the purpose of helping to prevent sudden and unexpected cardiac death in children and in young adults.

The SADS Foundation is dedicated to providing information, assistance & hope.

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SADS PROGRAMS

The SADS Foundation is dedicated to informing the general public (& families, medical professionals), about the effects of untreated/undiagnosed cardiac arrhythmias and the methods by which death can be prevented. Initiatives include sponsoring public awareness meetings in local communities, providing educational videos on LQTS, and establishing media relationships to promote publicity about these "silent killers", through magazine & newspaper articles and TV & radio shows. The Foundation also sponsors the International SADS Awareness Week (Month) each year (formerly the Long QT Syndrome Awareness Week), where volunteers and the foundation participate in awareness activities, support groups and other awareness events. Through comprehensive awareness programs, the SADS Foundations hopes to prevent additional tragedies that can be avoided through early detection and proper treatment.

• Train volunteers to inform their local communities and provide extensive materials for distribution in the community and for working with the media.
• Establish media relationships to promote awareness of unexplained sudden cardiac death in the young due to LQTS and other primary cardiac arrhythmia disorders.
• Sponsor the Annual International SADS Awareness Month each year.

Patient Support Services

The patient & family support program provides access to information, resources, research and support to patients' and families' who are dealing with genetic conditions that cause sudden cardiac death in the young or who have lost a loved one to sudden unexplained death. By providing this service, families receive information that helps them to make informed decisions. This program also provides a support network for the families through the Foundation and with other families throughout the United States. SADS receives a large number of e-mails and calls on the hotline from parents, families and friends who have questions. The staff provides assistance and compassion to those who have experienced a death, and connects them to physician and family referrals. SADS maintains a database of families nationwide and connects families with similar circumstances with each other to foster support in living daily with the effects of the Long QT Syndrome. Also, SADS provides information, suggestions, and guidance in helping families and friends forge supportive networking relationships.

• National Physician Referral Service. A yearly updated list of knowledgeable physicians across the country.
• Publication of an in-depth web site and an informational newsletter.
• Publication of the "Inherited Long QT Syndrome" informational pamphlet in English, Spanish and French and the "Acquired Long QT Syndrome" pamphlet.
• Dissemination of recent genetic and clinical findings concerning LQTS and related conditions.
• National networking support program for individuals and families dealing with an unexplained sudden cardiac death in a young person, LQTS, etc.
• Facilitate support groups held across the nation and provide National Contact Volunteers to assist families and patients.
• Assist families in pedigree development to identify family members who might be at risk for arrhythmia from conditions like LQTS.

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Physician & Health Professional Education (Awareness)

The SADS Foundation provides information to and education of medical professionals. Despite research findings and medical publications, genetic conditions that cause sudden cardiac death in the young remain largely hidden-not screened for and thus not diagnosed. As a result many children and young people continue to die each year unnecessarily. The SADS Foundation maintains an active physician education program through our network of researchers, who continually inform and train physicians to diagnose and treat Long QT, through seminars, conferences and medical journal publications. This is an important program in the fight to help prevent undiagnosed arrhythmias in families, which can result in death.

• Publication of an in-depth web site about unexplained sudden death in the young, LQTS, and other primary cardiac arrhythmia disorders.
• Distribute an informational newsletter. Over 30,000 issues mailed out each year.
• Publication of the "Inherited Long QT Syndrome" informational pamphlet in English, Spanish and French and the "Acquired Long QT Syndrome" pamphlet.
• Dissemination of recent genetic and clinical findings concerning LQTS and related conditions.
• Medical Examiner Contact Program.
• Seminars and conferences for physicians and other health care professionals.
• International SADS Conference: Preventing Unexpected Sudden Death in the Young

Advocacy/Research

We want to encourage genetic research in conditions that may lead to sudden cardiac death in the young. Our role is as a link between researchers and families. We also advocate for nondiscriminatory treatment for people who are diagnosed with these conditions. SADS is committed to supporting efforts that will improve the quality of life for patients with heart rhythm abnormalities.

• Advocate for individuals struggling to find answers due to the unexplained death of a loved one.
• Provide referral to and assistance with research projects.
• Work with other organizations-nationally and internationally-to advocate for measures beneficial to families and patients (AEDs in community, etc.)

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SADS Board of Trustees 2007

Michael J. Ackerman, M.D., Ph.D.   President
Mayo Clinic
Rochester, MN

Susan Etheridge, M.D.   Vice President
Primary Children’s Medical Center
Salt Lake City, UT

Nancy Adams   Sec/Treasurer
Director of Finance
The Hope Heart Institute

G. Michael Vincent, M.D.   Founder/Member Emeritus
LDS Hospital
Salt Lake City, UT

Robert Campbell, M.D.
Children's Healthcare of Atlanta Sibley Heart Center
Atlanta, GA

Marjorie Currey
Instructor & Freelance Writer
Dallas, TX

Denise Falzon
Real Estate One
Orchard Lake, MI

Ralph W. Hardy, Jr. Atty
Dow, Lohnes & Albertson
Washington, D.C.

Laurie Smith Hooper
Public Relations/Government Affairs
Nashville, TN

Katherine Timothy
Genetic Research
Kaysville, UT

Martin Tristani-Firouzi
University of Utah, CVRTI
Salt Lake City, UT

Chris Anderson, MD
Sacred Heart Hospital
Spokane, WA

SADS Scientific Advisors 2007

Michael J. Ackerman, M.D. , PhD
Mayo Clinic
Rochester, MN

Charles Antzelevitch, PhD
Masonic Medical Research Laboratory
Utica, NY

Robert Campbell, MD
Children's Healthcare of Atlanta Sibley Heart Center
Atlanta, GA

Isabelle Denjoy, MD
Service de Cardiologie
Hopital Lariboisiere
Paris, FRANCE

Susan Etheridge, M.D.
Primary Children’s Medical Center
Salt Lake City, UT

Arthur Garson, MD
University of Virginia
Charlottesville, VA

Thomas Klitzner, M.D
Pediatric Cardiology
UCLA David Geffen School of Medicine
Los Angeles, CA

Sylvia Priori, M.D.
SGP, Molecular Cardiology
Fondazione Salvatore Maugeri
Pavia   Italy

Dan Roden, MD
Division of Clinical Pharmacology
Vanderbilt University Medical Center
Nashville, TN

Peter Schwartz, MD
Policlinico S. Matteo IFCCS
Pavia    ITALY

Jeffrey Towbin, MD
Department of Pediatrics
Baylor College of Medicine
Houston, TX

Martin Tristani-Firouzi
University of Utah, CVRTI
Salt Lake City, UT

Samuel Viskin, MD
Tel Aviv  ISRAEL

Victoria Vetter, MD
Division of Cardiology
Children's Hospital of Philadelphia
Philadelphia, PA

Arthur Wilde, MD
Academic Medical Center
University of Amsterdam
Amsterdam   NETHERLANDS 

Raymond Woosley, MD
Vice President for Health Sciences
University of Arizona College of Medicine
Tucson, AZ