September 2015: In This Issue

September 2015
October is Sudden Cardiac Arrest Awareness Month
B e on the lookout during the first week of October to receive a Sudden Cardiac Arrest Awareness Email brought to you by the SADS Foundation so that you may forward to family, friends, and colleagues to spread the word about what to do in a Sudden Cardiac Arrest emergency to save a life. For more information, please contact Lynn at 801-531-0937 or , or visit our website to learn more about SCA emergency preparedness.
You're Invited! Baltimore/Washington DC Area Family Support Meeting for Families with Cardiac Arrhythmias

Saturday, November 7, 2015 from 10:00 AM to 12:00 PM
Room 140, Phipps Building, Johns Hopkins Hospital
There will be a short presentation by Johns Hopkins Genetic Counselor Brittney Murray on SADS conditions, followed by informal sharing of stories. 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.
All family members (including children) are welcome. Please RSVP to Andy Golden at
Sponsored by the Johns Hopkins Hospital Division of Cardiology and the SADS Foundation.

For directions and more information, click HERE.
Lighting Your Neighborhood for SADS
Two of our SADS families have started traditions in their neighborhoods of different ways to light up their streets for SADS. Proceeds from both events benefit the SADS Foundation.
The first is Brittany's Trees, established in 2005 by Tony Valene and Jim Guthrie to celebrate the holidays and memory of eight-year-old Brittany Valene, who died of Long QT Syndrome. Brittany's vibrant spirit inspired her family, friends and neighbors in Carol Stream, Illinois to place a glowing Christmas tree in each neighbor's yard representing Brittany's heart. Brittany's Trees began with 22 trees and has continued to grow over the past ten years as more and more people catch the spirit.
The second is the Annual Coconut Creek Luminary Night, started by the Halle family three years ago in Ft. Myers, Florida. Neighbors gather for an evening of holiday food, fun, and cheer as well as spreading awareness and raising funds for SADS. Each family displays luminary bags that light their pathways for the holiday season.
Both events not only benefit SADS, but have become a part of a meaningful holiday tradition in the middle of the rush of the season. Please contact Jan at or 801-531-0937 for more information about either of these neighborhood celebrations.
Speakers Bureau Program is Educating Physicians

As we've reported to you all prior, we officially launched the SADS Foundation Speakers Bureau Program back in May during a session presented by our Board Chair, Dr. Michael Ackerman. A total of 40 different health care professionals from 18 states, Canada and Europe were trained, and most recently, Dr. Elizabeth Thomas presented in the New Orleans area. Her session was overwhelming successful, with 47 attendees! Some interesting statistics came from the evaluation component:
  • 93-100% overall positive (4/5 or 5/5) evaluation scores on the presentation measures
  • 100% participation in the evaluation program
  • 100% of attendees said the seminar met their professional needs
This graph shows the breakdown of the types of health care professionals in attendance:

Attendees also had the chance to provide feedback in their own words, and all of the comments were positive. The best one was probably this comment from a pediatric resident: "Excellent talk. Clear, concise, and extremely helpful."
We look forward to continuing to keep you all posted on this new and important program!
SADS UK Presents Annual Heart to Heart Conference
Did you know that the SADS Foundation has a number of affiliate partners, including SADS Canada,  SADS Hong Kong, SADS Italy and SADS UK? We also partner with other groups in Europe, South America, and Australia to expand our reach and ensure that families across the globe have access to information and appropriate referral and treatment. For more information on our international partners, please click here .
SADS UK's Annual Heart to Heart Conference is coming up, and is going to be held in London on October 17 th , 2015. For more information on this conference, please click here. And we applaud our friends on the other side of the Atlantic for their continued commitment to advocacy, education and family support for families with SADS conditions!
Dr. Ackerman's Seminar Series Continues in Chicago

Each year, the SADS Foundation invests time and resources toward its professional nationwide medical education program through newly launched programs like the Speakers Bureau and the Physician Seminar Series, which has been established for several years. The goal of these programs is to work in tandem to 1) educate cardiac specialists in the diagnosis and treatment of SADS conditions, and 2) educate other healthcare professionals on the warning signs of SADS conditions so that they can appropriately refer their families to a knowledgeable provider. This dual focus allows the SADS Foundation to ensure that frontline medical professionals know what to look for, and that there will be cardiologists with knowledge across the country to continue to grow our physician networks and base of support for families.
Board Chair Dr. Michael Ackerman, MD/PhD hosted a seminar series this month in Chicago, IL and it was well received, multifaceted, and highly successful. Dr. Ackerman presented lectures at Northwestern University Medical Center, Hope Children's Hospital, Advocate Health Center and Elmhurst Hospital over the course of two very full days. 

Next month, Dr. Ackerman will be doing a series of seminars in North Carolina at Duke and the University of North Carolina. Contact Alice Lara at for more information.

We appreciate all of the time Dr. Ackerman takes out of his already substantive schedule to help us continue to educate healthcare professionals so that ultimately, more people know about SADS and more lives can be saved. Thanks Dr. Ackerman!
New York State Votes to Support CPR in Schools

On September 17th, 2015, the Board of Regents officially voted in support of the long-awaited CPR in Schools policy for New York high schools! It will now be mandatory for every high school student to learn CPR throughout the State of New York.
Click here for more information.
Thanks to Rebecca Knowles and Debbie Meisner for their hard work, dedication, and commitment to making all kids safe at school. We are so proud of you!
Access to Genetic Testing: You Deserve Better!

The SADS Foundation believes that with genetic information, families can better understand their genetic risks and when necessary, take preventive action. Lowering costs of testing and making tests easier to get will help families everywhere. By working to make these genetic tests more available and affordable, we are giving families information that will help save lives.

Click here to learn more about how we help make genetic tests affordable and available to all our families.
SADS Scientific Advisor Accepts Two Prestigious Positions at Research Institute

This past summer, Scientific Advisor Charles Antzelevitch, PhD, accepted the position as Executive Director of the Cardiovascular Research Program at Lankenau Institute for Medical Research
and as Director of Research at Lankenau Heart Institute in Philadelphia, PA. Dr. Antzelevitch is an internationally recognized expert in electrophysiology and SADS conditions.

Dr. Antzelevitch will be assembling a cardiovascular research team of clinical investigators and basic scientists to advance the understanding of the underlying mechanisms of heart rhythm disorders and to translate those discoveries into potential new therapies. We congratulate Dr. Antzelevitch on his continued successes, and are grateful for all of the work he has done to help us better understand SADS conditions. 
Most Recent Changes to Drugs to Avoid List

Based on an analysis of emerging evidence, the following changes have been made to the Drugs To Avoid Lists:

Changes to two drugs used to treat psychosis, quetiapine (Seroquel® ) and ziprasidone (Geodon  and Zeldox® ) and changes to  the antibiotic gatifloxacin (Tequin ® )

Welcome, Shianne!
The SADS Foundation would like to welcome Shianne Gray, our new office manager, to the team. 
"Hello! I'm Shianne, and I am thrilled to be the newest member of the SADS team. I recently graduated from Westminster College with my bachelor's degree in Theatre Arts. Before moving to Utah for college, I lived in California, Florida, Japan, and Colorado. Throughout college, I was involved in several arts-related nonprofits, and last year, I started the Great Salt Lake Fringe Festival with my fellow students. In addition to working as a stage manager, director, and actor in theatre, I love to travel, explore the outdoors, and work with animals. I'm so excited for the opportunity to work with this fantastic foundation!" 

Awareness and Fundraising

Jonathan R. Cowley Golf Tournament - October 5, 2015, Glen Allen, VA
Mays Softball Tournament - October 15, 2015, Bidwell, OH
Brittany's Trees - November 28, 2015, Carol Stream, IL
3rd Annual Coconut Creek Luminary Night - December 12, 2015, Ft. Myers, FL


National Association of Medical Examiners Conference - October 2-6, 2015, Charlotte, NC
12th Annual Young Hearts with ICDs Conference - November 7, 2015, Iowa City, IA
American Heart Association Scientific Sessions - November 7-11, 2015, Orlando, FL
Parent Heart Watch National Conference - January 15-17, 2016, Orlando, FL
American College of Cardiologists Scientific Sessions - April 2-4, 2016, Chicago, IL

Please visit
for more information about any of the above events!


The SADS Foundation

Alice, Matt, Lynn, Jan, Shianne, and Brandon