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
February 2016: In This Issue

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.

Early bird registration open now! Click here to register at a reduced rate today!

February is Heart Month! Share this image from the SADS Foundation on Facebook, Pinterest, Twitter and more to spread awareness and save lives this month! 
SADS Foundation Courts K. Cleveland Jr. Young
Investigator Awards in Cardiac Channelopathy Research
Submission Deadline:  March 21, 2016
Award includes:
  • $500 to the recipient
  • $1,250 to the recipient's mentor or host institution to offset the cost of attending the annual HRS meeting
  • Recognition with a SADS Foundation YIA plaque
  • Presentation of the award at the annual PACES meeting on Wednesday, May 4, 2016
For more information, visit http://www.sads.org/research/yia-submit.
Profile of a Winner

Dr. Jeffrey Kim was recently quoted in an article in US News and World Report about the LifeVest being approved by the FDA for kids. It said, " experts stress the importance of educating families, schools and the public at large on the issue [SCA in kids]." "This can undoubtedly save lives" said Kim.
Since winning the first SADS Courts K. Cleveland Jr. Young Investigator Award in 2008, Dr. Jeffrey Kim joined the Texas Children's Hospital and is currently the Director of the Arrhythmia and Pacing (Electrophysiology) Service. He is also a member of the Heart Failure/Cardiomyopathy Service. He remains involved in collaborative translational research in molecular cardiology and is on the faculty of the Translational Biology and Molecular Medicine Department as well as the Cardiovascular Research Institute. His specific clinical interests include cardiac ablation techniques in children, and the management of genetic arrhythmia syndromes. His research interests include the clinical characterization of arrhythmias and cardiomyopathies, as well as the delineation of their molecular and genetic basis. He has a particular interest in the molecular aspects of arrhythmias and sudden death in heart failure, as well as the role of pharmacogenetics in the management of arrhythmias and cardiomyopathy.
We are so proud of the work our young investigators continue to do to "save the lives and support the families" of people with SADS conditions.
Featured Studies

New Type 3 Long QT Syndrome Drug

Long QT syndrome (LQTS) is a hereditary disorder characterized clinically by prolongation of the QT interval on a standard 12-lead electrocardiogram (ECG), and by cardiac events such as syncope, aborted cardiac arrest, and sudden cardiac death. Type 3 LQTS (LQT3) is a subset of LQTS with a genetic mutation leading to an abnormal cardiac sodium channel. Patients who have been diagnosed with LQT3, and are between the ages of 18-70, may be eligible to participate in a clinical trial.  The purpose of the study is to evaluate an investigational drug for use in patients with LQT3, as it is believed that the risk of life-threatening cardiac events in patients with LQT3 is related to QT prolongation.

The study will consist of approximately 6 months of treatment, and will include multiple clinic visits during the course of the study. If eligible, participants may receive compensation for time and effort.  Travel reimbursement will be provided to participants and an optional accompanying companion.
For more information, please visit our website or email Lynn@sads.org.

International CPVT Prospective Registry and Biobank Study

The study is currently enrolling individuals diagnosed with CPVT who are 19 yrs of age or younger and their immediate family members (mom, dad, brother, sister). 

There is no geographical limitation to participate and participation is completely voluntary. Click here to learn more and participate. 
Focus on Brugada Syndrome: Risk Stratification
Predicting who is at risk in BrS remains a clinical challenge because the presenting symptom is often sudden cardiac arrest (SCA). In contrast to patients with Long QT syndrome, who often have warning symptoms in the form of recurrent syncope, or fainting, before they develop SCA, in patients with BrS the arrhythmias often are lethal when they first occur. Risk prediction is particularly challenging in women and children with BrS.
A review of current research on predicting risk of a significant cardiac event in BrS written by some of our SADS Scientific Advisors was published in January, and we present the highlights here. (Risk stratification in Brugada syndrome: Clinical characteristics, electrocardiographic parameters, and auxiliary testing; Heart Rhythm 2016;13:299-310)
Strong Predictors of Risk
  • Male gender - although equal numbers of men and women carry the gene, most patients who develop symptoms are male, and males have a 7-fold increased risk of SCA. Although the genetic trait is present from birth, arrhythmias tend to occur within a relatively narrow age range; the mean age at the time of SCA is between 39 and 48 years.
  • A history of SCA or "arrhythmic" syncope is a strong predictor of spontaneous ventricular fibrillation (VF). It is therefore important to try to figure out whether an episode of syncope was a garden-variety "vasovagal" or "non-arrhythmic" faint (for example, after standing up quickly, after exposure to heat, with dehydration, from emotional reactions to events such as blood drawing, etc.)  vs. an "arrthythmic" faint (which often occurs without warning, and can be associated with abnormal breathing patterns). Unfortunately, it is not always possible to tell a scary "arrhythmic" faint from a "non-arrhythmic" faint.
Increased Risk
  • A spontaneous "type I Brugada ECG" - the presence of J-point and coved ST-segment elevation in the right precordial leads (not caused by a drug) increases the risk for VF in all studies.
Not Clearly Helpful in Predicting Risk
  • A history of sudden death in the family, and
  • The presence of a SCN5A mutation.
Potential Future Areas of Study : Signal-averaged techniques using late potentials (LP) and T-wave alternans (TWA) on the ECG show some promising results for risk assessment in small studies but need to be confirmed.
Recommendations : All patients with BrS, regardless of their estimated risk, should:
(1)  avoid drugs that may be proarrhythmic in BrS (www.brugadadrugs.org)
(2)  avoid intoxicating amounts of alcohol; and
(3)  treat fever immediately with local cooling and fever-reducing medicines.

In addition, families with BrS are encouraged to learn CPR and to consider purchasing an external automatic defibrillator (AED) for home use. Because of the limitations in assessing risk, prophylactic quinidine therapy is recommended as part of an ongoing international registry (see www.brugadasyndrome.info ) for all asymptomatic adult males with spontaneous type I ECG.

Disclaimer: Information provided by the SADS (Sudden Arrhythmia Death Syndromes) Foundation is intended for educational purposes only and in no way should be taken as medical, nursing or professional health-care advice or services. Always discuss any medical information or treatment issues with your physician.
Life Insurance with LQTS Type 1

A major life insurance company, Metropolitan Life, will consider offering life insurance to some adults with Long QT.  To be eligible for consideration a person with Long QT must:
  • Be over age 30
  • Have Type 1 Long QT
  • Not have an ICD (implantable cardioverter defibrillator)
Please understand that a firm offer can only be made after the life insurance company has reviewed your complete medical file.  To inquire further please contact:

Lee Slavutin MD, CLU
Stern Slavutin 2, Inc.
530 Fifth Avenue
14th Floor
New York, NY 10036
(212) 536-6025
Update: Ad Hoc Coalition to Save Lives 
Through Public Access to Defibrillation

"I am heartbroken because despite aggressive efforts on the part of our AED coalitio n-and each of you-Congress terminated FY 2016 funding for HRSA's $4.5 million Rural and Community Access to Emergency Devices Program. The good news is: Congress did approve increases in other HRSA funding sources available to grantees, such as the Rural Outreach (that will receive a $4.5 million increase for FY 2016) and the Rural Network Development (that will receive $19.4 million for FY 2016) programs - so the AED work will continue."

Claudia Louis
Senior Government Relations Advisor, American Heart Association

Upcoming Events

Sudden Death in the Young Symposium
Miami, FL
2/26 Zumbathon for Scarlett in honor of Scarlett Manelis Rochester, NY
3/6-3/9 13th International Dead Sea Symposium Tel Aviv, Israel
American College of Cardiologists Scientific Sessions
Chicago, IL


The SADS Foundation

Alice, William, Lynn, Jan, Shianne, and Brandon