Supporting Families. Saving Lives.
Sign-up for our Enewsletter here.
Read the latest about SADS conditions: news on promising treatments, legislation, updates on the foundation and its events, and people living and thriving with SADS conditions.
New York State Board of Regents Vote to Support CPR in Schools
September 17, 2015, the Board of Regents officially voted to make it mandatory for all high school students to learn CPR throughout the State of New York! Click on title to read more.
AHA Releases New CPR Guidelines
The American Heart Association has issued new guidelines for administering CPR. Bystanders should jump in quickly to give CPR, using breaths if they've been trained in CPR and using mobile technology to speed up the rescue of cardiac arrest victims, according to the American Heart Association's 2015 Guidelines Update for Cardiopulmonary Resuscitation and Emergency Cardiovascular Care.
2016 Young Investigator Awardees
The Sudden Arrhythmia Death Syndromes (SADS) Foundation announces the winners for the 9th Annual Courts K. Cleveland SADS Foundation Young Investigator Awards in Cardiac Channelopathies.
HSSA Champion Award Nomination
Nominations now being accepted for the 2016 HSSA Rob L. Walker Heart Safe School Champion Award!
33 States Now Require CPR Training Before High School Graduation. What Are the Others Waiting For?
33 states have made it mandatory for students to learn CPR before graduation high school.
Shared Decision-Making Allows Some Athletes with Heart Condition to Compete
A study on patients with CPVT seen at Mayo Clinic's Genetic Heart Rhythm Clinic to determine the impact of continued sports participation found that some people may be able to safely participate in athletics as long as they are well treated and well informed.
Next-Generation Cardiology Care
Cardiovascular care is often on the cutting edge of medicine, but hospitals are now making progress toward the next generation of cardiology with genetic testing and treatment that enable care to be far more targeted than past service lines. Contrasting the usual focus on identifying those at risk for cardiovascular issues, one of the main goals now is to identify those who are not at risk and to keep them healthy and out of the healthcare system.
KL2 Award Helps Former Young Investigator Awardee Pave His Career Path
David Auerbach's interest in pursuing a scientific career began during a hockey game his first year of college, when a teammate - who turned out to be a chief medical examiner - asked Auerbach if he would like to observe a case. Now Auerbach's career is taking a major step forward with a two-year KL2 Mentored Career Development Program award from the University's Clinical and Translational Science Institute. The two-year program designed to support the early career development of multidisciplinary scientists, helping them transition to an independent career as a clinical and translational investigator. He is now look at establishing an independent line of research, Auerbach decided to approach the problem in reverse: are people with long QT syndrome - a classically studied genetic cardiac disease that causes arrhythmias - also at an increased risk of seizures? David Auerbach was award the Courts K. Cleveland SADS Young Investigator Award in 2013.
Update on Beta Blocker Therapy: Clinical Consensus Supporting the Use of Nadolol for LQTS and CPVT
On September 20, the Heart Rhythm Society (HRS) released a policy statement titled "Beta Blocker Therapy for Long QT Syndrome (LQTS) and Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT): Are all beta blockers equivalent?" to reinforce the importance of appropriate beta blocker therapy for the treatment of these two genetic disorders. Writing committee members unanimously agree that nadolol is a front line and efficacious agent for LQTS and CPVT among patients of all ages at risk of sudden death.
Utica Teacher Publishes Book On Grief
The Utica Junior High's eighth grade language arts teacher was surprised by the faculty with a plaque in honor of a recent accomplishment: self-publishing a book. The book, titled "A Heart in Pieces: A Journey from Grief to Grace," stemmed from coping with the death of her daughter Mary, who died suddenly when she was 8 years old in 2003. After Mary died, it took six months to figure out her cause of death, which was Long QT syndrome...
Two Articles: Valparaiso University - First to be Accredited as a Heart Safe University
Valparaiso University has earned the first Heart Safe University Accreditation Award. "There has been quite a bit of attention here on campus because of it and I am excited to say that we were able to purchase five more AEDs, now up to 37," says Assistant Director of Recreational Sports Tristan Leonhard, "I have already set up training sessions for over 100 students once school begins..Not only has this made campus a heart safe atmosphere, but it is generating more awareness than I thought was possible!" To find out more, read the following articles: NWI Times and Chicago Tribune.
Genetic Alliance Supports New NIH Policy on Clinical Trials
the U.S. Department of Health and Human Services (HHS) issued a final rule specifying the registration and reporting requirements for clinical trials on drug, biological, and device products. It also provides a framework to implement a more efficient and effective compliance and enforcement program. This ruling is extremely important for Genetic Alliance and the individuals, families, and communities with whom we work. Clinical trials are critical to medical advances.
Mom Gets Heart-Saving Legislation Signed By Governor
A Blount County mom Rhonda Harrill used her own heartache, hoping it'll save other children. She took her mission about making schools more "heart-safe" to Nashville and on Thursday she got the governor to sign off on it. This newest law requires teachers and students to know how to use AEDs the right way in case they ever have to use it. Rhonda Harrill says this has been nothing short of an emotional journey. The first piece of legislation she helped draft, which went before lawmakers and passed, was back in 2010. Then this past June, she stood in front of lawmakers to have another piece of legislation signed by Gov. Bill Haslam. "He had something he needed to share with the world and I was blessed for him to choose me," said Harrill. "It's not whose gonna let me, it's who's gonna stop me." In the newest law, schools are required to have AEDs, regularly practice using those machines, and hold drills for teachers and staff on how to quickly save someone's life when their heart gives out. Junior and senior high school students will also be trained on how to use AEDs and perform CPR.
Premature Battery Depletion of St. Jude Medical ICD and CRT-D Devices: FDA Safety Communication
FDA is providing information and recommendations regarding St. Jude Medical’s advisory on ICD and CRT-D batteries that may fail earlier than expected. FDA and St. Jude Medical are alerting patients, patient-caregivers, and physicians to respond immediately to Elective Replacement Indicator (ERI) alerts. Due to problems with these batteries, patients do not have the normal 3-month lead time for device replacement. Some batteries have run out within 24 hours of the patient receiving an ERI alert. St. Jude Medical has initiated a recall and correction of the affected devices.