SADS 20th Anniversary Logo

September 2014

September, 2014 - In This Issue:
Sudden Cardiac Arrest Awareness Month - What YOU Can Do!
And What Others are doing with Heart Safe School Accreditation. 
Cameron Knowles
The SADS Foundation congratulates Rebecca Knowles and her family for getting Heart Safe School Accreditation up and running in upstate New York! Their story has been receiving a lot of media attention recently (see here for an article explaining her family's story). Because October is Sudden Cardiac Arrest (SCA) Awareness Month, we challenge you to raise SCA awareness in your schools and make sure they offer CPR training in school.

Does your school offer CPR training to kids? If so, let us know by emailing Jenny at with the name of the school, the city and the state. If your school doesn't offer CPR training for kids, urge them to consider adding this to the curriculum. The Heart Safe School Accreditation program (which you can learn about here) includes 7 elements necessary to make your school heart safe. We also have a free program (HOPE) for training hands-only CPR. Finally, you can watch videos and get more information about CPR here.

Help us raise awareness this October, and keep us updated on what you're up to!
Call to Action: Developing New Materials on College Life
Staff members have recently received a number of questions and requests for more information on how to transition into a college environment with a SADS condition, and we need your help. We're going to be putting together materials specific to navigating college life with SADS, and figured it would be best to go right to the source of time-tested, "front line-informed" strategies: YOU! To that end, we've generated a series of questions and we're looking for your input.

  • What have you (and/or your teen) done in the past to prepare for college? What worked? Be as specific as you can.
  • Who were the folks you informed first, and how? What would have helped in that circumstance?
  • What changes to your daily routine were needed to ensure your safety (if any)?
  • What three things did you learn that you wish you'd known before going to college so that you could be prepared?
Please send answers to the following questions to Matt at! Oh, and please use the title "College Questions" in the subject line!
Heart Safe School Accreditation Survey Results
The first Heart Safe School Accreditation survey results are in! The survey was completed by all schools who have received Heart Safe School Accreditation. Look for a PowerPoint of complete results to be posted on the Heart Safe School Accreditation website soon!
  • 31% of schools learned of new students at risk of sudden cardiac arrest.
  • 70% of schools made changes to individualized care plans. 
  • 61% of schools added AEDs to their building(s).
  • Confidence in staff to perform CPR and use an AED increased over 50%.
  • 100% of school reported an increased awareness of sudden cardiac arrest.
  • 100% of schools would recommend the program to other schools.

Join the craze and get your school accredited as a Heart Safe School today!

Contact Jenny Hoggard at or 1-800-STOP-SAD to find out how to get your school accredited or visit our website at for more information
SCA Covered in Men's Health Magazine!
The October Edition of Men's Health Magazine features a five page spread on Sudden Cardiac Arrest. Make sure to pick up your copy in stores!

To read the article online, go to Men's Health, there is also a section on Cardiac Arrhythmias, make sure to check it out!
Boston Scientific ICD Recall
ICDThe SADS Foundation was recently contacted by the Patient Services department at Boston Scientific about important product advisory information regarding a group of COGNIS™ CRT-D and TELIGEN™ ICD implantable defibrillators. Knowing that device safety is very important to our SADS families, we wanted to share with you. (The full advisory can be found here)

 A component in some COGNIS and TELIGEN devices has not performed as expected which can shorten battery life and require early device replacement. Boston Scientific has recently introduced software that further improves the effectiveness of these safety features and recommends that patients with devices in the identified group be scheduled for a clinic visit to upgrade their device with this new software. Once a device has been upgraded, normal device monitoring and follow-up can be continued. Boston Scientific also recommends that physicians monitor affected devices using the LATITUDE Remote Patient Monitoring system between office visits as a way to enable earlier detection of this behavior.

Here's what patients can do:
  • Check to see if their device is included by entering their defibrillator model and serial number in the device lookup tool available here and here.
  • Be sure and go to clinic device follow-up appointments as directed by their doctor, and
  • As always, contact their heart clinic, or go to the hospital emergency room immediately if they hear beeping tones coming from their device.
This advisory is publicly available on Boston Scientific's Product Performance Resource Center website, found here. Patients can contact Patient Services at Boston Scientific directly by calling 1.866.484.3268 and pressing "2" when prompted. Contact Matt at if you have questions or need assistance.
SADS Medical Examiner Outreach Program

The SADS Foundation recognizes the important role that medical examiners (or MEs) and coroners can play in identifying SADS-related deaths. Working in concert with MEs helps staff members network with families who have recently lost a loved one due to SADS conditions in order to identify other potentially-impacted individuals, raise awareness about SADS, and ultimately save lives through primary prevention efforts and physician referrals.

To that end, and in partnership with the National Society of Genetic Counselors' Cardiovascular Genetics special interest group, the SADS Foundation has been proactively identifying ME offices and sending informational materials to inform them of the importance of genetic specimen collection, guidance on how to store and transfer samples, and how to connect families with SADS staff for family support. Informational materials on SADS and the National Society of Genetic Counselors are supplemented by a magnet with step-by-step instructions for collecting samples to encourage those working in the ME office to contact the SADS Foundation if they have a potential SADS case.

The program has been very successful so far, with medical examiners located in both Ohio and California receiving materials; we know that we are making a positive impact from all of the calls we've received from ME office staff who want to connect with SADS and help us continue in our mission of supporting families and saving lives. Contact Matt at for more information.  
Events! Events! Events!
We at the SADS Foundation are incredibly fortunate to be blessed with families who kindheartedly give to us through volunteer fundraising events that help make it possible for us to continue our mission to support families and save lives of young people with SADS conditions.

During the past weeks, several events have been held throughout the United States. Each one has been uniquely inspired and delivered both awareness of SADS and an enjoyable and entertaining time. Our most heartfelt appreciation is extended to the following volunteers and their events:

Nancy Walker and Jan Schiller

August 14 - Chicago, IL - Microsoft Incubation Annual Kick-Off with Nancy Walker

Each year the Microsoft Incubation Team holds an annual kick-off meeting that includes a fund-raising event. Nancy Walker nominated the SADS Foundation to be this year's recipient and we were honored to be selected. The evening included an extremely entertaining lip sync competition where votes were pledges to the SADS Foundation. Microsoft also matches any pledges that are made making this a doubly giving event. Many thanks!

The Manelis Family

August 24 - Rochester, NY - Heartbeat for Scarlett Walk and Family Fun Day with the Manelis Family and friends

The Manelis family partnered with Penfield Girls Varsity Soccer Team to host the first annual Heartbeat for Scarlett Walk and Family Fun Day in honor of their preschooler Scarlett who has Long QT and suffered a brain injury during a cardiac arrest. This special event was enjoyed by all and greatly exceeded their original expectations. Next year is certain to be even better. Well done!

Left to Right: Diane Kazan, Dr. Ackerman, Scott Dailard, Alice Lara, and Kyle Kazan at
A Night Under the Stars
September 13 - Palos Verdes Peninsula, CA -  A Night Under the Stars
with Kyle and Diane Kazan
The first annual A Night Under the Stars was hosted by Kyle and Diane Kazan whose son was misdiagnosed with Long QT. The evening honored the Del Rosario family who lost their son Ultimate Fight Champion Shane Del Rosario, and the Paul family whose son Justin was diagnosed with and treated for Long QT and is now thriving. Nicola Persky made three videos telling the stories of misdiagnosis, an early death, and success living with SADS conditions. We were fortunate to have Dr. Michael Ackerman attend as a featured speaker. Our thanks for a wonderful event at a wonderful venue!
2014 Climbers

September 14 - Scotchman's Peak, ID - Climb to Conquer SADS
with Dr. Chris Anderson and friends

The last Climb to Conquer SADS led by  Dr. Chris Anderson took place this year. Since 2007, climbers have taken flags in memory of or in honor of SADS family members to the top of eight difficult peaks and raised nearly $150,000!
Thank you SADS Foundation Board Member Dr. Chris Anderson for launching and leading this amazing event for eight years! Climb on with our thanks!

Bill and Sally Layton

September 20 - Colorado Springs, CO - Oktoberfest with Bill and Sally Layton and gang
Longest-running event Oktoberfest hosted each year since 2003 by the Layton Family in honor of Sally Layton has featured brats, sauerkraut, local beer, local music, amazing silent and live auctions items, and fun German traditions raising more than $160,000! Thanks so much!  Prosit! (Cheers in German).

Please contact Director of Development and Marketing, Jan Schiller at 801-531-0937 or for information abut doing your own event.
Health eHeart Alliance Upcoming Research Summit
As a member of the interim steering committee of the Health eHeart Alliance, we here at the SADS Foundation wanted to let you know about an opportunity to be a part of an upcoming Patient-Centered research summit, to be held in San Francisco this November 6th and 7th. The summit will provide an opportunity for individuals/patients to assist in the development of key research ideas that will provide direction for future programs of research on heart conditions.

The Health eHeart Alliance is dedicated to pursuing research ideas from patients and helping the Health eHeart Study make research more "patient-centered." Through the Alliance, patients, researchers, and clinicians partner together to turn patient concerns and insights into actionable research agendas that improve lives. If you are interested in learning more about the upcoming conference, check out the website at and fill out a short survey, and feel free to email Matt at for more information.


Christie's Heartoberfest  
September 27, 2014 
Saratoga Springs, NY
Jonathan R. Cowley
Memorial Golf Tournament 
October 6, 2014 
Midlothian, VA

All for Al 
November 2, 2014  
Chicago, IL  

Brittany's Trees 

November 29, 2014 

Scotchman's Peak, ID  


Heart to Heart Conference at the Royal College of

October 18, 2014 
Cavendish Square, London



The SADS Foundation

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


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