2016 International Conference
September 30 - October 2, 2016


Location
San Diego, California
Marriott Mission Valley
Program Directors
Michael Ackerman, MD/PhD, Susan Etheridge, MD, James Perry, MD
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.
January 2016: In This Issue
Currently Enrolling: LIVE-LQTS

LIVE-LQTS is finishing its first six months of enrollment, and 400 participants have joined so far!

Many families are participating together, parents and children - and all the kids (and adults, too) are excited to get and wear the Fitbit!

To learn more, visit our website or go to www.livelqts.org.
Thank You!

Everyone at the SADS Foundation extends our most genuine appreciation to everyone who has given during 2015! Every donation matters and lets us know that you value what we do to support families and save young lives of individuals with SADS conditions.
 
The SADS Foundation, with our partners, has made remarkable accomplishments since we began in 1991, and we will be celebrating our 25th Anniversary starting in 2016. We are looking ahead to increasing the influence of the SADS Foundation Speakers Bureau, expanding the Pedigree Project, furthering the development of the SADS Ambassadors program, and launching a signature awareness and fundraising event: Take Steps to Stop SADS. We will continue to make an even larger difference as we remain the preeminent non-profit organization in the SADS community.

If you have not given a year-end gift already, please take the opportunity to donate right now to help the SADS Foundation as we celebrate the first 25 years and plan for the next 25 years. For information, please contact Jan at 801-531-0937 or jan@sads.org. Take steps to stop SADS!
Brittany's Trees Keeps Getting Bigger

Brittany's Trees is a neighborhood tradition that celebrates the holidays in memory of Brittany
Valene, who died just before her ninth birthday. Local neighbors decided to keep Brittany's memory alive by placing Christmas trees in their front yards. 

The first year, 22 trees were placed on neighborhood lawns.  This year, 1,800 trees were delivered and set up. Additionally, a neighbor played bagpipes to kick off the 9 a.m. start on Saturday to deliver the trees and  Brittany's Trees was on WGN Radio !

A special thank you goes to the following major sponsors who helped to make this year the most profitable one to date: ABM Commercial Flooring, Inc - Albert Lucenti, Recchia Racing - Mike Recchia, McWebb Packaging - Michele Recchia, Abbate Screw Products, Inc - Larry Abbate, Tracy's Bistro - Tim Axarides.

Check out the  Brittany's Trees Facebook page for  pictures from this year's event.
Young Investigator Award - Submissions Open Now!

To encourage the next generation of researchers in SADS conditions, the SADS Foundation is pleased to announce the 7th Annual SADS Foundation Courts K. Cleveland, Jr. Young Investigator Awards in Cardiac Channelopathy Research.

The YIA will recognize two outstanding, original academic works in the field of cardiac channelopathies - Basic Science and Translational/Clinical Science - and provide recipients a $500 cash prize. Winners of the YIA will also be recognized at the annual PACES meeting during the 2016 Heart Rhythm Society Scientific Sessions in San Francisco. 

For more information and to submit a manuscript, visit our website; all manuscripts must be received by March 21, 2016.
SADSConnect Update

We have worked hard to revamp our SADSConnect program, a program designed for youth by youth. SADSConnect puts youth in touch with a supportive community of other young people who can share similar experiences. Through SADSConnect, children, teens, and young adults can connect with peers, share their stories, and ask the questions that are important to them. This youth support program will not only help connect our younger members but it will also give them opportunities to get involved and spread awareness about SADS conditions in their community. For more information check out our website or email  ivana@sads.org.
Welcome, William!

William Shiflett, MPA has joined the SADS Foundation as our new Medical Education Director and Chief Operating Officer. 

" I discovered the SADS Foundation after working in public service and higher education for almost 25 years. Instantly recognizing the impact and importance of the SADS Foundation I was eager to join the team. Luckily, I received the opportunity of a lifetime and am now responsible for Medical Education and Operations. I am so fortunate to be a part of the SADS Foundation and eager to continue the good work of assisting individuals and families who are afflicted by heart arrhythmia abnormalities. 

Prior to joining the SADS Foundation I worked for the University of Utah School of Medicine where I would often quip that "I build doctors for a living." During my time at the School of Medicine I obtained a strong appreciation for heart health awareness when a family member was diagnosed with heart failure. From that experience I became a heart health evangelist and now preach the importance of heart health to all who will listen.

I am an avid supporter of the University of Utah (Go Utes!) which is where I earned my undergraduate degrees, history and political science, and my Master of Public Administration degree. My wife and I live in a small suburb within the Salt Lake Metropolitan area. We have three sons, whom we're honored to be known as their parents, and a small dog named Teddy. I greatly enjoy architecture, urban design, tinkering on cars, politics, and researching historical and popular culture subjects."
The SADS Foundation Network in Action

For Medical Advice...
One of our SADS members with LQTS called with concerns about a drug that had been prescribed to him by his surgeon. He was in quite a bit of pain, but he checked and saw that the prescribed drug was on the Drugs to Avoid list for LQTS. He called us for advice, and our CEO Alice Lara emailed the SADS Network of Scientific Advisors. Within hours, responses came in from both national and international experts on LQTS. The recommendations were passed along to our SADS family member, who was grateful for the help. We are thankful for our knowledgeable and supportive network of Scientific Advisors!

...and for Outreach to potential SADS Families
Thanks to a recent tip to SADS Staff from a family member, we were alerted to the sudden death of a healthy young man in Florida. Because SADS Staff have attended meetings of the National Association of Medical Examiners (NAME) for the last seven years, we had the contact information for the local Medical Examiner. In addition to contacting the ME, we notified a local SADS Referral Physician who was available to answer questions, we contacted the media regarding a follow-up story about SADS conditions, and we sent a message to the family in order to provide support for them and answer any questions. Unfortunately, the first indication of SADS conditions for many families is an unexpected death. We know this is an important opportunity to save the lives of at-risk family members, which is why we have our Sudden Death Response Plan

What can you do?
If you hear of a death or if you see an obituary of a sudden death in a young person that seems to fit the profile of a SADS condition, please send the information to sads@sads.org or call 1-800-STOP-SAD.
CredibleMeds
Drugs to Avoid

Recent changes have been made to the CredibleMeds.org Drugs to Avoid List for LQTS. Updated drugs include oxaliplatin (Eloxatin
®), asenapine (Saphris ®, Sycrest®), and hydrocodone (Hysingla ER and Zohydro ER).

For more information, click here.
Upcoming Events

1/15-1/17
Parent Heart Watch National Conference
Orlando, FL
2/26 Zumbathon for Scarlett in honor of Scarlett Manelis Rochester, NY
4/2-4/16
American College of Cardiologists Scientific Sessions
Chicago, IL

Sincerely, 

The SADS Foundation

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