Vision, Commitment, and Action: The SADS Foundation Leads the Way to Save Lives

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

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

Learn more here about the Sudden Arrhythmia Death Syndromes (SADS) Foundation, a leader in education, research and advocacy for families and individuals at risk for cardiac arrhythmias that can cause sudden death in young people.

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.

Since its inception, the Foundation has demonstrated its strong commitment to reducing sudden arrhythmia deaths by initiating programs to encourage continued research, raise awareness, and provide ongoing support to affected families. We remain dedicated to informing individuals and communities about the risks and symptoms of cardiac arrhythmias, and will continue working with them to provide assistance and support. If patients are diagnosed early and if they receive preventative precautions, medication and information, they are much less likely to experience a fatal cardiac episode.

The SADS Foundation has continued to grow and strengthen. Through innovative utilization of social media, comprehensive growth strategies, and a highly effective board, we have seen unprecedented growth in our awareness and our fundraising. We are reaching more people, raising awareness of the warning signs, facilitating appropriate referrals, and preventing tragic young deaths. It is an exciting time to become involved with the SADS Foundation, and we invite you to join us.

The Foundation established several critical goals:

  • Health Professionals Education: Facilitate early diagnosis and treatment of heart rhythm abnormalities by ensuring that healthcare providers have all available current and relevant information.
  • Family Support: Provide information, resources, and support to assist patients and their families to make informed medical decisions and to live with the challenges of these conditions. 
  • General Awareness/Prevention: Increase the general public’s knowledge of the warning signs of heart rhythm abnormalities that can cause sudden death in the young. 
  • Advocacy: Encourage increased arrhythmia research, nondiscriminatory treatment and efforts that will improve the quality of life for patients with heart rhythm abnormalities.

Physician and Health Professional Education

The SADS Foundation provides cutting-edge information and education to healthcare professionals nationwide to facilitate early recognition, accurate diagnosis, and treatment of heart rhythm abnormalities. Statistics indicate that more than 4,000 children die unexpectedly from SADS conditions each year. These conditions include LQTS, Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT), Short QT Syndrome (SQTS), Brugada Syndrome, Wolff-Parkinson-White (WPW), Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC), etc.

In 2011, we are focused on increasing our existing physician education program by working closely with our network of experts to provide seminars, CME programs, Webinars, etc. Our ultimate objectives are to: 1) create a comprehensive network of pediatric and adult specialists across the country who can diagnose and treat SADS conditions according to best practices; 2) create awareness of SADS conditions in primary care physicians (emergency room, pediatricians, family physicians, etc.); and 3) conduct targeted medical seminars to provide education to medical cardiac specialists.

This year, the SADS Foundation will host the 5th SADS Foundation International Conference: Preventing Unexpected Sudden Death in the Young, October 1-2, in Atlanta, Georgia. This conference offers a unique opportunity for physicians, healthcare providers, patients and families to hear from internationally recognized specialists who focus on cardiac arrhythmias and interact with other colleagues diagnosing and treating SADS conditions. This course will provide CME credits, allow participants to ask questions to the world’s experts, including Dr. Silvia Priori and Dr. Michael Ackerman, and will cover topics such as: Diagnosing Channelopathies, Challenges of Living with SADS Conditions, State of Pre- and Post-Mortem Genetic Testing, Genetic Counseling, ICDs, Latest Treatment Options, LQTS and Brugada Syndrome Drug Lists, and a discussion about what diagnosis and treatment of channelopathies might look like in 2020. (For more information, please see www.SADS.org/Medical-Professional-Education)

The SADS Foundation’s partnership with the Pediatric and Congenital Electrophysiology Society (PACES) also exemplifies our commitment to medical education and research. Together with PACES, we have recognized the collaborative power of our continued commitment to patients, families and medical education, including inviting the PACES Chairperson to sit on the SADS Foundation Board of Trustees. Together we co-sponsor educational conferences, and for the fourth year in a row, we have presented the SADS Foundation Young Investigator Awards in Cardiac Channelopathies Research, including awards for Basic Science and Translational/Clinical Science, at the PACES pre-HRS meeting.

Patient and Family Education

Our Patient and Family Support Services improve people’s ability to make informed decisions about the diagnosis and treatment of LQTS and other life-threatening arrhythmias. SADS has been a trusted resource for 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, providing them access to information, resources, research and support. In 2010 alone, we distributed more than 25,000 newsletters and more than 10,000 educational brochures were mailed.

We facilitate a nationwide support network for people who have SADS conditions and/or who have lost loved ones to sudden death. In 2010, almost 900 new families contacted the SADS Foundation for the first time seeking information and assistance, and thousands of people contacted us with medical questions and the need for a referral to a physician.

Many people with SADS conditions are diagnosed at a young age when they tend to feel the effects of this diagnosis most acutely. They are often restricted from activities they love and are given a very confusing diagnosis that is hidden from the general public. The SADS Foundation provides youth support services through the SADSConnect program, which puts youths in touch with a supportive community of fellow young people who can share experiences and help kids feel they are not alone with their diagnosis. Kid-friendly information and resources are also provided, along with parental support.

The SADS Foundation is also building and maintaining a patient registry (the Pedigree Program) that benefits both patient families and research communities. By entering information, patients are able to use our database to identify members in their family tree who still need to be evaluated and potentially treated. Researchers can utilize the data we collect to study the etiology and prevalence of SADS conditions. This patient database can be accessed to provide patients the opportunity to participate in lifesaving and groundbreaking research. Currently, we mail newsletters to over 13,000 people (three times a year), and many more access our website daily. We are reaching out to these people to update their information and give them tools to help expand their family pedigree.

Community and Public Outreach

The SADS Foundation is committed to informing the general public and the media about the effects of undiagnosed and untreated cardiac arrhythmias. Initiatives include sponsoring public awareness meetings in local communities, providing educational videos and resource kits on SADS conditions, and establishing media relationships to promote publicity about these “silent killers” in magazine and newspaper articles as well as TV and radio programs. 

We also sponsor the International SADS Safe Schools Month in September of each year; this targets teachers, nurses, coaches and others who work with children. Last year, volunteers in all 50 states distributed materials and provided education about SADS conditions, warning signs and how to get at-risk children evaluated. More than 11,000 posters and wristbands and flyers were distributed. The success of our programs, facilitated by our devoted volunteers, motivates us to continue in such a worthy cause!

Our affected families also take an active role in raising awareness for SADS conditions, and have found it can be a very healing and therapeutic experience. All around the United States, families and friends of those affected by SADS host fundraising and awareness events, often garnering local media attention. Our 5th Annual Climb to Conquer SADS event in July 2011, for instance, brings families all across the country into partnership with experienced SADS climbing teams in Washington State. Families raise money and decorate banners, which are then brought to the summit of Mt. Rainier in celebration of that family. Oktoberfest celebrations, formal galas, bowl-a-thons, golf tournaments, wine tastings, baseball games and even bluegrass concerts are just some of the events that rally friends and families together, all to raise awareness of SADS conditions and funds for our lifesaving programs.

For the SADS Foundation, the Internet is an invaluable tool to raise awareness, communicate with volunteers, convey vital information to families, and to provide support service links 24/7. Our website receives an average of 10,000 visits per month, and this is increasing. In 2010 alone, tens of thousands of people found the information and materials they needed about SADS conditions. As more people learn the facts about SADS evaluation and treatment options, more people will be saved from an early death.

Through comprehensive awareness programs, the SADS Foundation hopes to prevent additional tragedies that can be avoided through early detection and proper treatment.

SADS Sudden Unexplained Death Outreach Policy was developed in response to media coverage of sudden unexplained death cases in young people. We know that medical professionals, families and entire communities are left with questions when tragedies occur, especially when the first “warning sign” for many families is an unexplained death. Due to the genetic aspect of these conditions, we recognize the important opportunity to save the lives of other at-risk family members. We have designed a media surveillance system to identify sudden death cases and also receive notice from affected people and from physicians. We make immediate contact with the medical examiner’s office where the autopsy is being performed to ensure proper samples are retained for genetic testing if needed. We also reach out to school nurses, administrators, coaches/athletic advisors, and reporters — as well as the family — to make sure other family members are screened and treated. We work closely with our own Scientific Advisory Board and local SADS referral network physicians to serve as resources to media and healthcare networks in the local community. 

Advocacy and Research

The SADS Foundation proactively communicates with the National Institutes of Health, the United States Congress and the Administration to encourage increased genetic research on conditions that may lead to sudden cardiac death in the young. We are leaders in the national Sudden Cardiac Arrest Coalition, advocating for improvements in the prevention and treatment of sudden cardiac arrest. The SADS Foundation also supports increased funding for federal programs that expand the availability and use of automated external defibrillators (AEDs).

We actively partner with researchers to design studies, recruit participants and facilitate the “bench to bedside” transfer of lifesaving treatments, diagnostic breakthroughs, and quality of life measures.

Action — Partnerships Foster Continued Success

The SADS Foundation’s goals for the future are ambitious, and thus require generous support and participation of our key community and industry leaders. We are actively seeking to partner with corporations, foundations and individuals who are interested in investing to increase awareness and treatment of SADS conditions throughout the United States.

We hope you will consider joining the SADS Foundation Board of Directors and medical professional team to combat Sudden Arrhythmia Death Syndromes. Together we will move the traditional boundaries of science and research to create new and brighter futures for our children.

For more information, please visit www.sads.org or call 1-800-STOP-SAD