SADS Foundation :: Sudden Arrhythmia Death Syndromes Foundation

Public Awareness

The SADS Foundation is dedicated to informing the general public (and 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 and 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 and Family Support Services

The patient and 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

Advocacy and 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.)

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