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EP Lab Digest Features SADS Foundation
EP Lab Digest Features SADS Foundation
8/3/2011
Vision, Commitment, and Action: The SADS Foundation Leads the Way to Save Lives
By, Christine Fontanella, Medical Education Director, Laura Wall,VP for Development, and Alice A. Lara, BSN, SADS President and CEO The SADS Foundation -- Salt Lake City, Utah
Cardiac Arrhythmias: A Major Killer
For the SADS Foundation, lost lives are a call to action — to prevent death, to support affected families and to champion awareness, research and treatments.
Arrhythmia deaths are sudden, but many can be prevented. Most sudden cardiac deaths in children are due to hereditary conditions, but thankfully, most cardiac arrhythmias are treatable. Symptoms of genetic arrhythmias are frequently misdiagnosed and, because these conditions are inherited, parents, siblings, and extended family should also be evaluated and treated to prevent their sudden deaths. Sadly, family histories of unexplained death or non-fatal symptoms (e.g., fainting spells or shortness of breath) are rarely recognized as warning signs of imminent danger. Parents, pediatricians, coaches, teachers, and school nurses need to know these warning signs and the importance of being evaluated by a physician when indicated.
Vision — Sudden Arrhythmia Deaths are Prevented Through Research and Medical Intervention
In 1991, a group of scientists headed by Drs. Michael Vincent and Mark Keating at the University of Utah discovered the first genes that cause Long QT Syndrome (LQTS). This was a landmark development in the study of unexplained sudden death. This breakthrough confirmed suspicions that LQTS was more common than once believed. As doctors learned more about prolonged QT intervals, it became clear the syndrome was widely misunderstood and often misdiagnosed.
Researchers and physicians realized the lifesaving potential of this new information. With proactive screening and early diagnosis, there was a real possibility to save the lives of those with LQTS.
Commitment — Researchers, Medical Professionals and Families Working Together to Make a Difference
For 20 years, the Foundation’s mission has been 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. With recent faculty additions, a strong core of experienced staff, and a distinguished Scientific Advisory Board, we have compiled our “dream team” and expanded our public awareness outreach, patient and family support, medical education and advocacy, and research involvement.
The SADS Foundation promotes increased medical research, develops and disseminates information, and initiates programs to assist children, parents and families affected by sudden arrhythmia syndromes. The values of passion and compassion are the underlying forces that motivate SADS families, researchers, medical professionals, board members, and staff to fulfill our mission and goals.
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Warning Signs
Family history of unexpected, unexplained sudden death under age 40.
Fainting or seizure during exercise, excitement or startle.
Consistent or unusual chest pain &/or shortness of breath during exercise.