C.A.R.E. for Your Heart ... All Year Long!

Mary Jo Gordon, Executive Director, Cardiac Arrhythmias Research and Education (C.A.R.E.) Foundation, Inc.

Mary Jo Gordon, Executive Director, Cardiac Arrhythmias Research and Education (C.A.R.E.) Foundation, Inc.

The CARE Foundation is a nationally recognized non-profit organization with the mission to formulate, promote and lead initiatives to prevent sudden cardiac death due to acquired and heritable heart rhythm disorders, including electrical abnormalities such as Long QT (LQTS) and Brugada Syndromes (BrS), as well as structural disorders such as Hypertrophic Cardiomyopathy (HCM) and Arrhythmogenic Right Ventricular Cardiomyopathy (ARVD/C). We accomplish our mission by: Advocating increased support for comprehensive scientific research and clinical trials. Educating patients, the public and healthcare professionals to increase awareness. Advancing strategies to identify, protect and support at-risk individuals and their families. The history of CARE dates back to 1986 when a small group of physicians and researchers who shared concern about the problem of sudden cardiac death met informally to discuss the issues of the lack of public, professional, and political attention to this enormous public health issue. This group, known as the Coalition for the Prevention of Sudden Cardiac Death, represented scientists and clinical leaders in the electrophysiology community, pioneers of many of the diagnostic tools and lifesaving therapies we are so fortunate to have available today. With the commitment to increase public awareness and to encourage political and scientific action, the Coalition formalized its efforts in 1995 by incorporating the Cardiac Arrhythmias Research and Education (CARE) Foundation to actively raise funds to support research and educational programs in cardiac arrhythmias. Over the past 12 years, CARE has made significant contributions to the prevention of sudden cardiac death through advocacy, research and educational initiatives: Advocacy Members of CARE’s Scientific Advisory Board lobbied U.S. airlines to carry automatic external defibrillators (AEDs) and train flight crews to provide CPR on board their planes. Due to these efforts, all domestic air carriers are today in compliance and their planes are equipped with these lifesaving devices. As part of the Genetic Alliance, CARE and its members are advocating for the passage by the U.S. Congress of a critically important bill, The Genetic Information Nondiscrimination Act (GINA). GINA would make it illegal for any individual to be discriminated against for employment or health insurance based on their genetic predisposition for an inherited disorder such as LQTS or HCM. Research The CARE Foundation Career Development Awards (CFCDA) have granted nearly $500,000 to young investigators at Vanderbilt University, the University of Alabama at Birmingham, and Johns Hopkins University. These research grants, made between 1999 and 2002, were awarded to study mechanisms, therapy and prevention of arrhythmias and sudden death. CARE is currently collaborating with more than 25 leading heart advocacy and professional organizations as members of the Sudden Cardiac Arrest Coalition (SCAC) to introduce an omnibus bill to amend the Public Health Service Act. If passed, the bill would provide the U.S. Department of Health and Human Services with necessary resources to increase research and to promote awareness for the prevention of sudden cardiac arrest. Education CARE has developed a variety of resources and programs to increase awareness and educate patients, the public and healthcare professionals about sudden cardiac death. Each year, CARE’s Heart to Heart educational seminars are offered in cities around the United States, bringing together patients and affected families to network and learn about the latest research and clinical breakthroughs from physician experts in LQTS, HCM, and other heritable heart rhythm disorders. These highly successful meetings are funded through educational grants from the Medtronic Foundation. In 2006, CARE expanded the Heart to Heart program to include allied health professionals, school nurses and emergency medical technicians, as well as pediatricians and family practice physicians. Through our outreach and education efforts, those on the front lines of primary care gain increased awareness of arrhythmia disorders affecting children and young adults, and are encouraged to refer at-risk patients to cardiologists or electrophysiologists for additional screening. Since 2002, CARE has distributed more than 15,000 copies of the PowerPoint presentation entitled The Long QT Syndrome: Overview and Management, which was developed by Arthur J. Moss, MD, in conjunction with the Scientific Advisory Board of CARE. A newly updated version of this highly successful and relevant program was released in May 2007. Interested professionals may request a free copy of the LQTS program by emailing care@longqt.org. CARE is developing additional PowerPoint modules specific to other channelopathies and arrhythmia disorders. CARE staff members are also certified American Heart Association CPR/AED instructors dedicated to training students, families and healthcare professionals in their communities. To date, we are proud to have trained more than 1,500 individuals to be life savers. Patient and Family Support For many of us involved with the day-to-day operations of the foundation, our commitment to CARE’s mission is both professional and personal. Our first national director, Doris Goldman, lost two adult children, Jack at age 20 and Sharon at age 29, due to Long QT Syndrome. Sharon left a husband and five-month-old son. My own family first confronted LQTS in 1979, when my youngest sister Karen suffered cardiac arrest at age 17. Subsequently, five members of my immediate family including myself were diagnosed with LQTS. Therefore, when a patient or affected family member contacts CARE, they find compassion, empathy and support from people who have walked in their shoes, and that can mean the world to someone facing what may be the most difficult and frightening time in their life. CARE responds to requests for support from over 3,000 patients and families and more than 1,000 healthcare professionals annually. Services provided include specialist referrals, rhythm disorder information, educational materials, volunteer opportunities and networking with other affected families. The CARE Foundation’s Web site is rich with information and the latest news regarding arrhythmia science, clinical research, genetics, healthcare policy, medical resources and links to other organizations. The site’s Tales from the Heart section features real-life patient stories to encourage and empower others as they cope with their own heart rhythm disorders. Visitors to the Web site can register to receive the free quarterly CARE e-newsletter and also download brochures and other print materials such as the Drugs to Avoid wallet card for patients with Long QT Syndrome. In addition, CARE recently launched its new and improved Online Community, which is hosted by ClinicaHealth Communities. Members are able to connect with others who have rhythm disorders, lost a loved due to sudden cardiac death or care for those who have suffered a sudden cardiac arrest. Members may participate in discussion groups, surveys, or build their own online support network. They can even create a personal blog. Membership in the CARE Online Community is free. Member information will never be shared, and the site is monitored daily by both ClinicaHealth and CARE Foundation staff. To learn more about the CARE Foundation, please visit our Web site at www.longqt.org. There is a wealth of information and references available to the cardiology and electrophysiology professional, as well as valuable online services and support for your arrhythmia patients. Contact CARE at 800-404-9500 or care@longqt.org if you have questions or are interested in participating in one of our local or regional educational seminars. Thank you for your continued support of our work and the outstanding CARE you provide to those with heart rhythm disorders! Cardiac Arrhythmias Research and Education (C.A.R.E.) Foundation, Inc. 26425 NE Allen Street, Suite 103 PO Box 369 Duvall, Washington 98019