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C.A.R.E. Accomplishments - FY 2004
- A primary goal of the Cardiac Arrhythmias Research & Education (C.A.R.E.) Foundation has been to fund medical research on sudden arrhythmic death. Since 1996-97, we have provided nearly one-half million dollars in C.A.R.E. Foundation Career Development Awards to young investigators at Vanderbilt University, University of Alabama, and two awards have gone to researchers at Johns Hopkins University.
- Promoting awareness within the medical community is ongoing. C.A.R.E. has distributed several thousand PowerPoint presentation folders of "The Long QT Syndrome: Overview and Management" .This was prepared by Arthur J. Moss, M.D. and members of our Scientific Advisory Board.
- More than 1,500 were mailed to Long QT families, who were asked to share them with their pediatrician, primary care physician and local hospital staff. The presentation is also available in Spanish.
- Sent more than 7,500 information packets containing newsletters and the brochure, "Cardiac Arrhythmias and the Prevention of Sudden Death", to physicians, nurses, paramedics, athletic coaches and families affected by sudden cardiac death. Many more were distributed electronically via e-mail and this website.
- More than 800 physician referrals were made to pediatric and adult electrophysiologists and cardiologists.
- The "Heart to Heart" program is a series of educational forums organized in cities throughout the U.S. C.A.R.E. invites affected families in each region to hear a panel of experts provide the most up-to-date information about genetic research and scientific breakthroughs. Our intention is to inform and empower these families and help them form support groups that will work within their own communities to advocate public access defibrillation and pre-participation screening of young athletes in their local schools. The forums have already taken place in more than 17 cities, and nearly 1,900 affected family members have attended these informational forums.
- Exhibited at NASPE (North American Society of Pacing and Electrophysiology) for the ninth consecutive year. Educational materials are given to medical professionals and to affected families.
- Continued to monitor genetic discrimination by insurance companies. C.A.R.E. actively endorses and supports national legislation to end genetic discrimination in health care and employment. After successfully getting health care coverage for a young boy with the Long QT syndrome, C.A.R.E. has helped others who were turned down by their insurers as having a "pre-existing condition". This experience was used as the lead editorial in USA TODAY and an article on genetic discrimination in Reform Jewish magazine this past year.
- Successfully lobbied U.S. airlines to carry portable defibrillators and upgraded medical equipment on their planes. All domestic airlines are now equipped with AEDs, as are most U.S. airports.
- Provided leadership that allowed Miami to become the first major city in the U.S. to provide AEDs (automatic external defibrillators) for each of their high schools. Many states have since passed legislation that mandates placement of AEDs in their schools. C.A.R.E. has actively participated in 2 conferences led by the National Center for Early Defibrillation, whose prime focus is AEDs in the Schools.
- Distributed more than 15,000 wallet-size cards that list medications to be avoided by Long QT patients and others with potentially lethal cardiac arrhythmias. Response has been phenomenal, and many physicians and children's hospitals in the United States are distributing the cards.
- C.A.R.E. continues to participate in the National Heart Blood and Lung Institute's conference of Public Interest Organizations, consisting of non-profits that fund medical research.
- Increased public awareness has resulted from C.A.R.E. volunteers speaking before the school nurses associations in their communities. Many school nurses request additional information and/or physician referrals.
- The Lifetime channel aired Nikki Taylor's story, which brought in many requests for information on ARVD.
- Features appeared on "E" Channel, all major TV networks, Wall Street Journal, Miami Herald, Washington Post, Woman's Day, EMS magazine, San Jose Mercury News, and local media throughout the United States.
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