To save the lives and support the families of children and young adults who are genetically predisposed to sudden death due to heart rhythm abnormalities.
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.
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.
The SADS Foundation is dedicated to informing the general public, families, and 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 as well as TV and 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.
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.
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508 E. South Temple, Suite #202, Salt Lake City, UT 84102