2016 International Conference
September 30 - October 2, 2016

San Diego, California
Marriott Mission Valley
Program Directors
Michael Ackerman, MD/PhD, Susan Etheridge, MD,
James Perry, MD
Martin Tristani-Firouzi, MD 

Early bird registration  
closes May 1!
to register at a reduced rate today!
Program highlights will include a Fireside Chat with
Dr. Michael Ackerman, cutting edge research,
a comprehensive update on medical devices,
breakout sessions and networking, our Heart Safe School Accreditation Program, the Healing Wall Ceremony,
and a special event: Take Steps to Stop SADS. 

April 2016: In This Issue
Don't Miss This Keynote Speaker!  
Dr. J. Craig Venter will be the Keynote Speaker at the 9th Annual International SADS Foundation Conference - Putting it Together: From the Genome to the Phenotype on Friday, September 30, 2016 in San Diego, California. Click here to register for the CME Sessions and see Dr. Venter and all of our esteemed speakers.

Venter is an American biotechnologist, biochemist, geneticist, and entrepreneur. He is known for being one of the first to sequence the human genome and the first to transfect a cell with a synthetic genome. Venter founded Celera Genomics, The Institute for Genomic Research (TIGR) and the J. Craig Venter Institute (JCVI), and is now CEO of Human Longevity Inc.

Venter was listed in Time magazine's 2007 and 2008 Time 100 list of the most influential people in the the world. In 2010, the British magazine New Statesman listed Craig Venter at 14th in the list of "The World's 50 Most Influential Figures 2010". He is a member of the USA Science and Engineering Festival's Advisory Board.
J. Craig Venter Institute Bio - J. Craig Venter, Ph.D., is regarded as one of the leading scientists of the 21st century for his numerous invaluable contributions to genomic research. He is founder, chairman, and CEO of the J. Craig Venter Institute (JCVI), a not-for-profit, research organization with approximately 250 scientists and staff dedicated to human, microbial, plant, synthetic and environmental genomic research, and the exploration of social and ethical issues in genomics... read more at www.jcvi.org/cms/about/bios/jcventer/

Human Longevity Inc. Bio - J. Craig Venter, PhD, is the Founder, Chairman, and CEO of the J. Craig Venter Institute (JCVI), a not-for-profit, genomics-focused research organization with approximately 250 scientists and staff. Dr. Venter began his formal education after a tour of duty as a Navy Corpsman in Vietnam from 1967 to 1968. After earning both a Bachelor's degree in Biochemistry and a PhD in Physiology and Pharmacology from the University of California at San Diego, he was appointed professor at the State University of New York at Buffalo and the Roswell Park Cancer Institute. In 1984... read more at http://www.humanlongevity.com/about/j-craig-venter/.

Synthetic Genomics Inc. Bio - Dr. J. Craig Venter is regarded as one of the leading scientists, most notably for the first sequencing and analysis of the human genome published in 2001 and the most recent and most complete sequencing of his diploid human genome in 2007. In his role at SGI he will provide visionary guidance and strategic scientific direction for the company. Craig is also Co-founder, CEO and Executive Chairman of Human Longevity Inc. (HLI) and CEO and Chairman of the not-for-profit J. Craig Venter Institute. He and his teams have sequenced more than 300 organisms including human, fruit fly, mouse, rat, and dog as well as numerous microorganisms and plants. Craig is also the key leader in the field of synthetic genomics... read more at www.syntheticgenomics.com/team.html#jcventer.

And there is so much more!!
New Guidance on Preventing Sudden Cardiac Death
in Athletes Published
The Journal of the American College of Cardiology published a consensus statement on April 15th that establishes guidance for conducting pre-participation screenings of college athletes and encourages emergency action plans for quickly responding to sudden cardiac arrest.
A major finding of the task force was the need to streamline how cardiac arrest in student-athletes is recognized and responded to. It was recommended that all universities have a written emergency action plan for treatment of cardiac arrest that is well-rehearsed, with different protocols for treatment during a practice versus during a game/championship event since treatment during a game can be vastly different due to traffic delays and access problems for emergency medical services.
Routine use of electrocardiograms is not recommended by either the ACC or the AHA. However, for NCAA-member institutions that are doing ECGs, they recommend that only physicians trained according to ACC/AHA/Heart Rhythm Society recommendations should obtain the ECGs. The task force recommended establishing regional referral centers that can provide pre-participation ECG interpretation, clarity on the cardiovascular status of athletes with irregular findings during their pre-participation screening, evaluations of new cardiovascular symptoms that develop during training or competition, and consultations on when a player with a cardiac issue is cleared to play.  

Click here to read full article. 
Screening Young Athletes Is Not Proven to Save Lives
2_lacrosse_players.jpg There is ongoing debate and disagreement about the benefits and harms of pre-participation screening for young athletes. A comprehensive review of the literature just published in the British Medical Journal found that the effectiveness of screening in reducing the number of sudden cardiac deaths among non-professional athletes aged 14-34 years has not been substantiated by solid evidence.
They conclude that the potential of screening to reduce deaths is "likely to be low because of the poor detection rate and the uncertain effectiveness of the management of the diseases identified in asymptomatic people. Pre-participation screening induces harm because of the high number of false positive test results leading to temporary or lifelong disqualification from competitive sports, psychological and financial harm, and medical follow-up and treatment with unknown benefit. In addition, it leads to young people avoiding exercise known to be beneficial to their overall health. As long as those at high risk of sudden death cannot reliably be identified and appropriately managed, young athletes should not be submitted to pre-participation screening."

Click here for the full article.
First Schools Renew Heart Safe School Accreditation

Congratulations to Gorsuch West Elementary and Thomas Ewing Junior HIgh both in in Lancaster, Ohio, who are the first schools to renew their Heart Safe School Accreditation to continue providing a secure place to learn, work, and play!

If you would like to find out more about making schools Heart Safe in your local community, please visit www.StopSADS.org/HSSA or contact Lynn at 801-272-3023 lynn@sads.org. Join us in making a difference in our kids' lives!
Participate in Research and Have Fun at the Same Time!   
Enroll in the "Live LQTS" study, currently accepting people with LQTS age 8 to 50 years old. If enrolled, you will receive a Fitbit-type pedometer to wear a few weeks per year, which is yours to keep. Participation involves a telephone interview and filling out questionnaires online or on the phone. There are no geographic limitations to participation! It's a three year study, with a brief questionnaire every six months. The study goal is to determine how lifestyle and exercise impact the well-being of individuals with LQTS. This study is funded by the National Institutes of Health.
For more information, please call the LIVE- LQTS coordinating center at 866=207=9813 or email live.lqts@yale.edu or www.livelqts.org
QT Drug List and New Article by Scientific Advisors

pills.jpg The safe use of the CredibleMeds® lists of medications requires that the user have the most up-to-date lists and be aware when changes are made to the lists. Therefore, we wish to inform you of the following changes. We have reviewed the available evidence for ezogabine (an anticonvulsant also known as retigabine) (brand name Potiga® or Trobalt®) and found convincing evidence that it can prolong the QT interval. We have therefore added it to the list of drugs with Possible Risk of TdP. 

Evidence has been found that the antiviral drug atazanavir (brand name Reyataz®), now on our Possible Risk list, is associated with TdP when taken with other drugs that prolong the QT interval. Therefore, we have moved it from the Possible Risk list to the Conditional Risk list. These drugs are now on the list of Drugs to Avoid in patients with Congenital Long QT Syndrome (if at all possible).

SADS Foundation Scientific Advisors  Peter Schwartz, MD,  and Raymond Woosley, MD, have authored an invited review article that appears in the April issue of the Journal of the American College of Cardiology entitled Predicting the Unpredictable - Drug-induced QT Prolongation and Torsades de Pointes. The article can be obtained or viewed at the following url: http://content.onlinejacc.org/article.aspx?articleID=2506371 - JACC.   
Family Support Meeting 
health_food_heart.jpg The Johns Hopkins Hospital Division of Cardiology and the SADS Foundation are hosting a Baltimore/DC area Family Support Meeting for families with cardiac arrhythmias. The meeting will be on June 11, 2016 from 10 a.m. until noon in the Phipps Building, Room 140 (first floor), at the Johns Hopkins Hospital.
The Phipps building is easy to get to. It is on the "L" if you go to the 600 North Wolfe Street entrance of the hospital (the old main entrance).  On Saturdays, parking in the Washington Street Garage is free!  It is a little walk to the Phipps Building. Attached is a map of the Hopkins Medical campus.
Johns Hopkins Genetic Counselors Brittney Murray & Rebecca McClellan will give a short presentation on SADS conditions and be available for questions. Literature from the SADS Foundation will also be available. If you would like to learn more about SADS and meet families with similar conditions, please join us. Coffee, beverages, and pastries will be provided.
Please RSVP to Andy at (alexandandy3@verizon.net). All family members (including children) are welcome. 

The SADS Foundation

Alice, William, Lynn, Jan, Corinne, and Brandon