SADS 20th Anniversary Logo

January 2015

January 2015: In This Issue:
SADS 8th International Family Conference Registration
Early Bird Pricing Ends February 15!

Early bird pricing is only good until February 15, 2015! Make sure to reserve your spot today!

Ticket Pricing
Adult Ticket before
February 15, 2015           $90
Adult Ticket after
February 15, 2015          $120
Youth/Teen Ticket before
February 15, 2015           $40
Youth/Teen Ticket after
February 15, 2015           $50

For more information on the conference including the draft agenda, how to register, and details on how to get involved with different aspects of the program, please click here or contact Matt at or 800.STOP.SAD.

Thank You for 2014!
All of us at the SADS Foundation send a tremendous heartfelt THANK YOU to all of you who invested your time and funds supporting our programs that prevent young deaths from SADS conditions. We will continue to assist and resource families, reach out and educate medical professionals, disseminate and promote prevention and awareness materials and activities, and continue to encourage research and advocacy endeavors. Stay tuned through 2015 for new initiatives, new programs, and new activities as we meet the newly-determined ongoing needs of our families.

We couldn't do what we do without you!!

For information about how you can be a part of supporting our efforts, please contact Jan Schiller at 801-531-0937 or
HSSA Program Continues to Grow
SADS is pleased to announce that five new schools in Ohio recently received Heart Safe School Accreditation! These schools successfully completed all seven accreditation elements, including risk assessments sent to all students; care plans where appropriate; emergency drill plans; providing video footage of emergency drills; Hands Only CPR and AED training of adults; training of children; and an awareness/advocacy activity. These schools include:
  • Logan Chieftan Elementary School
  • Amanda Clearcreek Primary School
  • Amanda Clearcreek Elementary School
  • Amanda Clearcreek Middle School
  • Amanda Clearcreek High School
Amanda Clearcreek is now the 2nd district in the nation to have all schools district-wide receiving accreditation in the HSSA program. We here at SADS are thrilled that the program continues to spread and grow, providing children, school staff, and families with the information and training they need to keep themselves "Heart Safe." Congratulations to our newest HSSA schools!

For additional press coverage of the efforts of these fantastic schools, click here and here!
Brugada Syndrome Drug Warnings Change
The Brugada Syndrome Drugs website (found here) has listed 3 new medications to their Avoid and Preferably Avoid lists:
  • To the 'Avoid list' the drugs Allapinine and Ethacizine have been added. These drugs may be used to treat heart rhythm disorders such as atrial fibrillation or extrasystoles but may result in adverse events in Brugada syndrome patients. Therefore we advise to not use these drugs in Brugada syndrome patients and to look for alternatives. Please know that these drugs are not  regularly available in many countries.  
  • To the 'Preferably avoid list' the drug Bupropion has been added. Bupropion may be used as an anti-depressant drug. Data emerged that this drug may be associated with the uncovering of the 'Type-1' Brugada ECG and as such may precipitate arrhythmias. Therefore we advise to preferably avoid this drug and to look for alternatives or to pay close attention to its effect.
These drugs have been added to the patient letters available in many different languages (18 languages now available!). You can print the updated patient letter from and provide it to your patients or health care professionals.

Learn More
Honoring the Hearts of SADS in February  

As the Heart Month of February is approaching, the SADS Foundation is looking to honor the Hearts of SADS in the following ways:

 Honor the Founding Heart of the SADS Foundation
by donating to the Dr. G. Michael Vincent Heritage Fund

In the early 1970s, Dr. Vincent and his associates identified and began to study and treat several families with Long QT Syndrome. Dr. Vincent's team actively expanded family pedigrees and prospectively screened family members for LQTS. Many LQTS patients were identified through this proactive approach.

It was during this time that Dr. Vincent shared his thoughts about starting a new foundation to help families affected with LQTS. Through his extensive energy, tireless efforts, and compassionate leadership, the SADS Foundation became an official 501(c)3 non-profit organization to further life-saving endeavors in May of 1992.  

The Dr. G. Michael Vincent Heritage Fund will provide funding to expand the programs of the SADS Foundation as we strive to advance the knowledge, treatment, advocacy, and research of SADS conditions so that families will be kept whole to enjoy the future of children, grandchildren, and the rewards that come from active and healthy lives.

Please donate now to let Dr. Vincent know of your appreciation for his critical early work and his establishment of the SADS Foundation so that families with SADS conditions will be better diagnosed and treated and receive the support they need to live and thrive.
  • During the month of February, anyone who sends a donation of any size to the SADS Foundation will receive one of our red SADS Bracelets as a special thanks for Heart Month.
  • Also during the month of February, anyone who sends a donation of $50 or more to the SADS Foundation will receive a SADS T-Shirt to show our appreciation during Heart Month.
  • Lastly, Nominate a Heart Hero!! Send a high-resolution photo and a story of 200 words or less telling us who is your Heart Hero and why. We will publish your Heart Hero in our E-Newsletter. For further details or to submit your story, please contact Grace at 801-531-0937 or
The deadline for submission is Saturday, February 28th.

Stories will be published in the March E-Newsletter.


We look forward to hearing from all of you!


Sudden Unexplained Death Bill Signed Into Law

On December 28th, 2014, President Obama signed into law the Sudden Unexplained Death Data Enhancement and Awareness Act. This law amends the Public Health Service Act to help enhance awareness about unexplained deaths related to stillbirth, sudden unexplained infant death, and sudden unexplained death in the young. The law will allow the Department of Health and Human Services to collect standardized, consistent data about these types of deaths.

Through better understanding of the causes of sudden explained death, it is hoped that research can be conducted to prevent deaths and improve the health of all infants and children. The SADS Foundation is thrilled to see such an important bill passed. We look forward to seeing how the legislation will impact our understanding of sudden unexplained death and support new approaches that improve people's lives and reduce their risk of death related to underlying heart conditions.
Research Spotlight
Pregnancy in women with an implantable cardioverter-defibrillator: is it safe?

In this article, authors describe obstetric/neonatal and cardiac outcomes for a cohort of women carrying implantable cardioverter-defibrillators (ICDs) during pregnancy.

All women in routine follow-up at their institution for ICD implantation who became pregnant between 2006 and 2013 were included in this study. All ICDs were pre-pectoral devices with bipolar endocardial leads. Obstetric/neonatal and cardiac outcomes were assessed during pregnancy and post-partum. Twenty pregnancies were conceived by 12 women carrying ICD devices, 14 of which resulted in live births and none in maternal death. Seven of these women had structural cardiomyopathies and five had channelopathies. No device-related complications were recorded. Twelve shocks (nine transthoracic and three from ICDs) were experienced during pregnancy by two women, one of whom miscarried shortly afterwards at 4 weeks gestation. One stillbirth, three miscarriages and one termination were recorded for women with long QT syndrome, repaired tetralogy of Fallot and repaired Laubry-Pezzi syndrome, respectively. Intrauterine growth restriction, low birth weight, and neonatal hypoglycaemia were recorded in four, three, and five pregnancies, respectively.

Authors concluded that pregnancy had no effect on ICD operation and no evidence was found to link ICD carriage with adverse pregnancy outcomes, although one miscarriage may have been induced by ICD shock therapy. A worsening of cardiac condition occurs in specific cardiac diseases and β-blocker therapy should be continued for all women carrying ICDs in pregnancy as the benefits outweigh the risks of taking this medication.
Celebrate Wayne and Conquer SADS

Thank you to Shannon Kiss and the family and friends who were once more a part of the Celebrate Wayne and Conquer SADS Event held this past December for the 4th year! The evening in Atlanta featured amazing local musicians and many silent auction items from artists of all kinds. We extend our genuine appreciation to Shannon for her dedication to the SADS Foundation in memory of her loving and wonderful husband Wayne Sawyer. Thanks for makin' Wayne proud! 
AED funds raised by LQTS Teen after attending school in UK

Two summers ago, American seventeen-year-old Nicole Bencie attended the Oxford Royale Academy (ORA) summer school in England. But going overseas to study wasn't as easy as it might have been; Nicole had originally been told by the ORA staff that she would not be able to attend because of her heart condition: she is a SADS patient living with Long QT Syndrome (LQTS). At less than three months old, Nicole was diagnosed with the heart condition which she inherited from her mom, Teresa. Prior to Nicole's diagnosis, Teresa was unaware that she had the same condition. Her younger sisters, Nathalie and Noelle, were also diagnosed with LQTS. All three girls take beta-blockers and carry AEDs with them to school.

While in Oxford, Nicole spent a lot of time trying to understand the dynamics and challenges that faced the program's directors in regards to having AEDs and trained nurses/administration on site. After spreading awareness and understanding, the head program coordinator felt more comfortable with the idea of implementing a better safety program that included AEDs for immediate response in case of an SCA emergency. When the two-week program ended, Nicole coordinated with the SADS Foundation, SADS UK, and her school FIT Club (a club she founded in 2012 that promotes healthy living!), to raise money to purchase an AED for the summer school.

After a year of fundraising, several bake sales, and much effort, enough funds were collected to purchase the AED, which will continue to benefit international students and the staff/faculty at Oxford Royal Academy for years to come. We are very proud of you, Nicole!
You're Invited!
You're invited to attend the 12th annual ADAMS Night at the Doubletree by Hilton, 510 East IL Route 83, Mundelein, IL 60060. The date to save is Saturday, February 28, 2015. Doors open at 5:30 p.m. and dinner is served at 6 p.m.  So bring your family and friends to enjoy a delicious buffet, cocktails, dancing, raffles, auctions, candy bar, and much more... book your table today!  For more information, go to

Kindly respond by Wednesday, February 11, 2015.
Research Spotlight
The safety of modern anesthesia for children with LQTS

In their article about the safety of anesthesia for children with LQTS, authors including SADS Scientific Advisors Susan Etheridge, MD, Prince Kannankeril, MD, and Shu Sanatani, MD discuss how patients with long QT syndrome (LQTS) may experience a clinical spectrum of symptoms, ranging from asymptomatic, through presyncope, syncope, and aborted cardiac arrest, to sudden cardiac death. Arrhythmias in LQTS are often precipitated by autonomic changes. This patient population is believed to be at high risk for perioperative arrhythmia, specifically torsades de pointes (TdP), although this perception is largely based on limited literature that predates current anesthetic drugs and standards of perioperative monitoring. We present the largest multicenter review to date of anesthetic management in children with LQTS.

They conducted a multicentered retrospective chart review of perioperative management of children with clinically diagnosed LQTS, aged 18 years or younger, who received general anesthesia (GA) between January 2005 and January 2010. Data from 8 institutions were collated in an anonymized database.

The authors concluded that with optimized perioperative management, modern anesthesia for incidental surgery in patients with LQTS is safer than anecdotal case report literature might suggest. Our series suggests that the risk of perioperative TdP is concentrated in neonates and infants requiring urgent interventions after failed first-line management of LQTS.
February 11, 2015 
Dallas, TX

SADS 8th Annual  
International Conference 
May 29th - 31st , 2015 
Long Island, NY 


The SADS Foundation

Alice, Christine, Matt, Jan, Grace, and Brandon.