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.

 If you have a St. Jude ICD, click here for specific advice.
2016 Annual International SADS Foundation Conference a Huge Success!!
Family Conf 16
The SADS Foundation staff came home exhausted and excited at how wonderful the 9th Annual International SADS Foundation Conference turned out to be! We could not be more grateful to all of the health care professionals and families who attended. We extend our deepest appreciation to our partner Rady Children's Hospital, each of our speakers and volunteers who gave of their time and talents to educate all of us about the newest in research and treatment of SADS conditions.

Additionally, we thank all of our sponsors and exhibitors for underwriting the conference and keeping costs low for our participants. This list includes: Gilead, Audentes, Ambry Genetics, Cardionet, GeneDX, Invitae, OneBeat CPR, and Medtronic. Click here to look at our gallery of conference photos and our Youth Track video.

International SADS Affiliates Meet in San Diego

International SADS Affiliates gathered for the first time after the SADS Foundation Conference in San Diego concluded.  Affiliates represented include: the SADS Foundation, SADS UK, SADS Canada, SADS Hong Kong, SADS Mexico, and about-to-be-established SADS Argentina. All of us will continue to be in touch with one another about international issues and look forward to meeting again after the conference on September 22-24, 2017, in Toronto, Ontario, Canada.
First Take Steps to Stop SADS Event Rocks!
  The SADS Foundation would like to extend our most heartfelt appreciation to EVERYONE who helped to make the first Take Steps to Stop SADS event held on Friday Evening, September 30, 2016, at the 9th Annual International SADS Foundation Conference in San Diego, California.

Special thanks go to our sponsors Cardiac Insight and Brotherhood Crusade, our special guests Dwayne Polee Jr. and his mom Yolanda Kenon, and event committee members Scott Dailard, Rachel Flores, and Jennifer Paul. For information about holding your own Take Steps to Stop SADS Event, please contact Jan at 801-272-3023 or

Click here for more photos and event information. 
Sudden Cardiac Arrest Awareness Month
October is National Sudden Cardiac Arrest (SCA) Awareness month. Each year, more than 350,000 people have sudden cardiac arrests outside of a hospital, not even a third receives CPR from a bystander, and only 10.4% survive. For every minute without life-saving CPR and defibrillation, chances of survival decrease 7%-10%. Immediate CPR and defibrillation can more than double a victim's chance of survival.
Help raise awareness about SCA in your communities and protect our children. This year we continue to advocate for laws mandating CPR training for high school graduation. We're also encouraging Heart Safe School Accreditation. And finally, we're asking you to talk with your local EMS (911) service and encourage them to train their staff to provide bystander coaching for CPR. New research proves how effective this can be in saving lives.
For more information, click here
SADS Foundation Speakers Bureau
Designed For Health Care Professionals

The SADS Foundation Speakers Bureau is built on a "train the trainer" model; members of our Medical Education Committee develop and vet program materials, SADS Foundation staff members create supporting documents and policies and procedures; and speakers take those materials and represent the SADS Foundation as an expert to targeted members of the healthcare community.

Jorge McCormack, MD, MBA, a pediatric electrophysiologist, has been an active participant of the SADS Foundation Speakers Bureau since its creation. This summer Dr. McCormack presented o ur slide set on recognizing syncope and the red flags of sudden cardiac arrest to a group of Fellows in Tampa Bay. When asked about the outcome of his presentation Dr. McCormack said the Fellows were well engaged and interested the information presented. We at SADS Foundation were very pleased to receive this feedback and are excited to have an excellent provider like Dr. McCormack as a member of the SADS Foundation Speakers Bureau.

We are eager to increase the impact and success of our Speakers Bureau and have added new slots for members of the health care community. For more information about the SADS Foundation Speakers Bureau, including how to become a member, contact our Director of Medical Education William Shiflett at 801-272-3023 or
Another Successful
SADS Safe Schools Campaign
It is now October, and that means that our September SADS Safe Schools campaign month has ended. We are happy to report that in the month of September we received numerous requests for care plans and awareness materials! We also had a number of people contact us, wanting more information for their families as well as their communities.

While our September campaign is over, we are hopeful that we can continue the same spirit of support and awareness throughout the rest of the year. If you have any questions about your child, or want to organize an awareness event in your community, please don't hesitate to contact Lynn at 801-272-3023 or It is never too late to set up a care plan for your child!
Watch for these Events
in Your Local Communities

Great events for our families with SADS conditions happen throughout the United States all year long. If you live near one of the following locations, check  out these valuable local events. 

November 5, 2016
Rachel's Race Raises Awareness
About Heart Disorder

An article from GazetteXtra.

Dave Lancour never heard of a disorder called long QT syndrome until his 22-year-old daughter, Rachel, died in her sleep in May 2015. After her death, the Lancour family discovered that Rachel had a gene mutation for long QT, which is a disorder of the heart's electrical activity that can cause sudden and dangerous arrhythmias.

Arrhythmias are problems with the rate or rhythm of the heartbeat.In many cases, cardiac arrest or death are often the first indications something is wrong, Lancour said.
Since Rachel's death, he and others in the family have tested positive for the syndrome. "Prior to Rachel's death, none of us had a clue that we had this," Lancour said. "Most people have never heard of the syndrome."

To raise awareness, family and friends organized Rachel's Race for Long QT Syndrome on Saturday, Oct. 8, at Skelly's Farm Market. The event also raised money for long QT research and will honor Rachel, who graduated from Parker High School in 2011 and was attending St. Louis College of Pharmacy at the time of her death. Lancour said most of the proceeds will go to the SADS Foundation, which is short for Sudden Arrhythmia Death Syndromes. Rachel's Race featured a 1-mile walk, a 5K run and a 10K run, both on scenic country roads. Organizers hope to make it an annual event. "It's been very difficult for us as for anyone in this situation," Lancour said. "The race does not take away our sadness or our loss."

Hailey Wedige, who has long QT syndrome, will run in the 5K race with her husband.
The Janesville woman found out she has the disorder in 2000 after her older brother, who was 12 at the time, suffered cardiac arrest. His grade school principal and second-grade teacher performed CPR on him, and he survived. After her brother was in the hospital a week, doctors discovered he has long QT syndrome."The rest of my family and I were tested after that," Wedige said. Several family members were diagnosed with it. "It was a difficult transition at first," Wedige said. "We were no longer allowed to participate in sports, and we all had ICDs implanted."

The SADS Foundation thanks Rachel and all those involved with Rachel's Race for Long QT Syndrome for raising awareness about and funds for SADS.
October 2016 - In This Issue
October 21-22
Boston, MA

November 5, 2016
Iowa City, IA

November 11, 2016
Dinner Seminar
with Dr. Michael Ackerman

New Orleans, LA

November 12-16, 2016
American Heart Association Scientific Sessions
New Orleans, LA

November 17, 2016
CPVT Family Symposium
Boston, MA

November 17, 2016

Dinner Seminar
with Dr. Michael Ackerman

Chicago, IL

November 18, 2016
Paint in memory of Gianna
Wallingford, CT

November 19, 2016
Baltimore/DC Area SADS Foundation Family Support & Educational Meeting
Baltimore, MD

November 26, 2016
Brittany's Trees
Carol Stream, IL

December 2, 2016
Roundball Rumble
Savannah, GA

December 8, 2016

SADS Symposium
Boston, MA 
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