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

Martin Tristani-Firouzi, MD 
 


 
to register today!
 
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. 




May 2016: In This Issue
SADS Foundation Conference - Family Program Highlights



young-family-portrait.jpg We are excited about our Family Program for the 2016 Conference in beautiful San Diego - plan to bring the whole family! Our conference will be located at the Marriott in Mission Valley, close to Sea World, Old Town, and Downtown San Diego.
 
Our event will begin Friday, September 30th, with keynote speaker Craig Venter, PhD at 10:00am. In the afternoon, we will have our popular SADS 101 and Heart Safe School Accreditation training. You won't want to miss the "Take Steps to Stop SADS" 25th Anniversary Kick Off Event, with buses to transport attendees to Mission Bay Park for our sunset fundraising walk along Mission Bay.
 
On Saturday, we will hear updates on the Latest Treatment Strategies and Cutting-Edge Research, as well as a "Fireside Chat" with Dr. Ackerman. Saturday morning will feature separate sessions for Youth (8-12) and Teens (13-19), on How the Heart Works, Treatment and Beta Blockers, Can I Still Play Sports? and a "No Parents Allowed" session for teens. Afternoon sessions will feature disease-specific breakouts (e.g., Brugada Syndrome, CPVT, LQTS 2) as well as special sessions for Women, Hormones, and Life Changes, Young Professionals, and a session for Non-Affected family members (e.g., connect with others who have performed CPR on a spouse!). The Healing Wall Ceremony will follow, with plenty of time to network at our evening social hour.
 
Sunday morning will wrap up at noon, featuring panel discussions on Pregnancy and Starting a Family, and Dealing with your school. Be sure to join us in San Diego! www.StopSADS.org/Conference2016.  
Speakers Bureau - Year One Successes!   
 
The SADS Foundation Speakers Bureau has proven to be more successful than we had originally anticipated. Between May 2015 and April 2016 members of the program have delivered over 40 presentations to approximately 800 participants. In the current month we are aware of two presentations that will be delivered; one in Tampa Bay, Florida and the other in Texas.
 
Over the coming months the Speakers Bureau Program will focus our efforts on reaching out to Emergency Medicine, Family Medicine and Pediatric specialists to increase education within those medical communities.



Please contact Director of Medical Education William Shiflett at 801-272-3023 or william@sads.org for further details. 
2016 Young Investigator Awardees
 
The Sudden Arrhythmia Death Syndromes (SADS) Foundation announces the winners for the 9th Annual Courts K. Cleveland SADS Foundation Young Investigator Awards in Cardiac Channelopathies. These Awards are administered by the Pediatric and Congenital Electrophysiology Society (PACES) and were presented at the annual PACES evening meeting on Wednesday, May 4, 2016, by Dr. Shubhayan Sanatani, Chair of the Committee and PACES Vice-President for Research.
 
Winners for the 2016 Young Investigator Award in Cardiac Channelopathies:



Basic Science Winner 
Worawan Limpitikul 
Gordon Tomaselli, MD 
Johns Hopkins University School of Medicine 
A precision medicine approach to the rescue of function in calmodulinopathy associated LQTS



Translational/Clinical Winner 
Bradley Clark, MD 
Charles Berul, MD 
Children's National Health System 
Minimally invasive percutaneous pericardial ICD placement in an infant piglet model: Head-to-head comparison with an open surgical thoracotomy approach



Congratulations to both of our winners and all of our 13 nominees!  
SADS Foundation at HRS Scientific Sessions 
Just look at everything the SADS Foundation accomplished at the 2016 HRS Scientific Sessions!! 
 
TUESDAY - MAY 3
SADS Foundation exhibited at the PACES Pre-Conference Research Meeting
at Stanford University
WEDNESDAY - MAY 4
SADS Foundation exhibiting at HRS Scientific Sessions. Thanks to Jasmine Wylie and Stephen Marra for helping us to man the booth!         


Working Lunch - NSGC - Cardiac Special Interest Group (SIG) - hosted by the SADS Foundation


 

Annual PACES Business Meeting
7 p.m.-10 p.m. - The Palace Hotel
SADS Foundation Courts K. Cleveland, Jr. Young Investigator Awards
administered by PACES will be presented to two outstanding young researchers
 
THURSDAY - MAY 5
Session JS01 - Steering through the Diagnostic Odyssey Following Sudden Unexplained Death
Chairs: Alice Lara, SADS Foundation, Salt Lake City, UT
             Amy Sturm, Ohio State University Medical Center, Columbus, OH
Speakers:
Heather M. MacLeod, MS, Independent Contractor, Elmhurst, IL
Michael J. Ackerman, MD, Phd, Mayo Clinic, Rochester, MN
Melissa Dempsey, Ambry Genetics, Aliso Viejo, CA                                                               
Brynn Dechert-Crooks, CPNP, FHRS, University of Michigan, Ann Arbor, MI
 
Working Lunch - PACES - Allied Health Group - hosted by the SADS Foundation



FRIDAY - MAY 6
SADS Foundation Scientific Advisors Working Breakfast


Session ME06 - Meet the Experts: Lessons Learned From the SADS Experience
Friday, May 6, 12:15-1:15 p.m.

Chair: Mitchel Cohen, MD, CCDS. Phoenix Children's Hospital, Phoenix, AZ
Speakers:
Silvia G. Priori, MD, PhD. Fondazione Salvatore Maugeri, Pavia, Italy
Arthur A. M. Wilde, MD, PhD. University of Amsterdam, Amsterdam, Netherlands
Sami Viskin, MD, Tel Aviv Medical Center, Tel Aviv, Israel
Lankenau Institute Scientist In Wynnewood Earns Distinction
Charles Antzelevitch, the Executive Director of the Cardiovascular Research Program at Lankenau Institute for Medical Research (LIMR) and Director of Research at Main Line Health's Lankenau Heart Institute, and one of the SADS Foundation's Scientific Advisor was named the winner of the 2016 Douglas P. Zipes Lectureship Award from the Heart Rhythm Society (HRS), the institute announced in a press release Thursday. 


He was presented the award on May 6 at a ceremony held during the 37th Annual Heart Rhythm Scientific Sessions in San Francisco. The annual award is given to an individual who has made a significant and unique contribution to the field of cardiac pacing and electrophysiology as a basic scientist, according to HRS.



Antzelevitch, a cardiovascular research scientist internationally known for his work in cardiac electrophysiology and arrhythmia syndromes, titled his lecture "Genetic, Ionic and Cellular Mechanisms Underlying the J Wave Syndromes."



Antzelevitch, as well as LIMR Professor, Dr. Gan-Xin Yan, recently convened an international task force of leading experts to develop a consensus report and a book on the subject of J Wave Syndromes. The report is due to be published by June in three medical journals simultaneously.



To select the Zipes award winner, the HRS president and Scientific Sessions Program Committee Chair poll the basic science community and present a recommendation for the winner of the award to the President of the Cardiac Electrophysiology Society (CES), who makes the final selection.



Antzelevitch's recent awards and honors include the Distinguished Scientist Award from the North American Society of Pacing and Electrophysiology (currently HRS); Excellence in Cardiovascular Science Award of the American Heart Association; Carl J. Wiggers Award of the American Physiological Society; the Distinguished Scientist Award of the American College of Cardiology; and the Distinguished Service Award of CES.



Over the years, Antzelevitch has served on many HRS committees, including the Board of Trustees. His contributions to the scientific literature include more than 500 original papers, reviews and book chapters, and seven books. He currently serves as Associate Editor of HeartRhythm, the official journal of the Heart Rhythm Society and Secretary-Treasurer of Cardiac Electrophysiology Society. 
Toni Scarbrough is Totally Dopey!!
By Bob Dalton for the Peachtree City Running Club Newsletter



That's right. New member and 44 year-old Toni Scarbrough took the Dopey Challenge and ran a 5K, a 10K, a Half Marathon, and a Full Marathon all in the span of four days at Disney World this past January. But that's not what makes her so unusual. After all, other people in the club have also accepted and met that challenge. What makes the difference for Toni is that she did it with an Implantable Cardioverter Defibrillator (ICD)!
 
Toni was born in Florence, Kentucky and moved to PTC when she was eight years old and lived there until 1994 when she married and moved to Newnan. She works in aviation maintaining technical publications and is also a catering supervisor for NASCAR events. Her husband, David, also works in aviation and they have two daughters, Amy (16), and Abby (12). In her catering job, Toni has worked such venues as Talladega, Daytona, Phoenix, California, Atlanta Motor Speedway, Kansas Speedway, and the Michigan International Raceway.
 
She was born with a heart condition that runs in her family known as Long QT Syndrome. It is essentially a disorder of the heart's electrical activity. It can cause sudden, uncontrollable, dangerous arrhythmias in response to exercise or stress. In fact, Toni had completed a 65-mile bike ride one weekend and fainted at home the next night. The doctor decided it was time to implant the ICD , so in July 2012, she underwent the procedure. An ICD is a Defibrillator and a Pacemaker combined and will shock heart when dangerous arrhythmias occur, but also keeps her heartrate at a constant beat and no lower. Two months later to the day, she ran a Breast Cancer 5K in Fayetteville and was the first female finisher!!"I ran my first marathon one year later (Savannah Rock n' Roll) and haven't stopped since." She just completed the Publix Marathon this past March.
 
Her favorite distance is the marathon and her favorite race is the Dopey because "it is very entertaining, very rewarding, they have beautiful medals and great shirts, and just being at Disney is great!"
 
She enjoys running because "it relieves stress, is rewarding, has great health benefits, and sets high expectations for my girls (don't quit what you start)."
 
She joined PTCRC "to get the 1000 Mile Jacket, to meet new people, and to learn all I can about running." Besides running, Toni "likes traveling, hiking, beach trips, and setting up NASCAR events."
 
For future goals, she wants "to do an ultramarathon this year and do a marathon every 10 years." She currently has her sights set on the Deer Dodge 50K in Milton, Florida this December. If there's anything certain about Toni, it's that if she sets her mind on something, she will make it happen, ICD or not!
Nadalol Availability - No Problem in the U.S.



Nadolol (brand name Corgard) availability in the United States is stable. The brand name product has changed manufacturers (so the drug will not be called Corgard any longer) but remains on the market. In the US, the generic version is available from five manufacturers in 20mg, 40mg, and 80mg doses.
Participate in Research and Have Fun at the Same Time!   
 
Enroll in the "Live LQTS" study, currently accepting people with LQTS age 8 to 50 years old. If enrolled, you will receive a Fitbit-type pedometer to wear a few weeks per year, which is yours to keep. Participation involves a telephone interview and filling out questionnaires online or on the phone. There are no geographic limitations to participation! It's a three year study, with a brief questionnaire every six months. The study goal is to determine how lifestyle and exercise impact the well-being of individuals with LQTS. This study is funded by the National Institutes of Health.
 
For more information, please call the LIVE- LQTS coordinating center at 866-207-9813 or email live.lqts@yale.edu or www.livelqts.org.  
QT Drug List
pills.jpg
The safe use of the CredibleMeds® lists of medications requires that the user have the most up-to-date lists and be aware when changes are made to the lists.  Therefore, we wish to inform you of the following changes. 



Buprenorphine, an opiate used to treat addiction, (brand names Butrans®, Belbuca®, Bunavail®, Buprenex®, Suboxone®, Zubsolv®): Substantial evidence associates it with QT prolongation but we found no convincing evidence of torsades de pointes arrhythmia (TdP) at this time.  Therefore, it has been added to the list with Possible Risk (PR) of TdP.



Capecitabine, a drug used to treat cancer (brand name Xeloda®):  Substantial evidence of QT prolongation was found but no convincing evidence of TdP. Therefore, it was added to the list with Possible Risk of TdP.



Loperamide (Imodium® and many OTC and Rx brand names), an over-the-counter drug used to treat diarrhea: It is associated with TdP when taken in very high dosages, most often by people addicted to narcotics.  Therefore, it was added to the Conditional Risk (CR) of TdP list (Condition = excessive dose).



These drugs are also now included in the list of Drugs to Avoid in patients with Congenital Long QT Syndrome (if at all possible).
National Medical Examiners Outreach Campaign
During 2015, nearly 500 magnets of procedures for collecting samples were sent to Medial Examiner and Coroner offices in nine different states in partnership with follow up by local genetic counselors. 



This Spring, we will be updating the information and complete the distribution of these magnets to Medical Examiners and Coroners offices in each of the 50 states. This outreach campaign will increase the collection of samples that may be tested for SADS conditions if required after the sudden death of a young person.



For more information, please contact William Shiflett at 801-272-3023 or william@sads.org. 
Timothy Syndrome Alliance Leadership Meeting  
 
The leadership team of the Timothy Syndrome Alliance will be meeting in San Francisco this May to confirm the mission, goals and objectives of the newly-established community group. Mary Ann Ciciarelli, Courtney Waller, Katherine Timothy, Alice Lara, and Lynn Johnson will meet before Rare Disease Patient Day with enthusiasm as they plan the strategy to support families with Timothy Syndrome and research towards better care and a future cure.
Baltimore/DC Area Family Support Meeting
 
health_food_heart.jpg The Johns Hopkins Hospital Division of Cardiology and the SADS Foundation are hosting a Baltimore/DC area Family Support Meeting for families with cardiac arrhythmias. The meeting will be on June 11, 2016 from 10 a.m. until noon in the Phipps Building, Room 140 (first floor), at the Johns Hopkins Hospital.
 
The Phipps building is easy to get to. It is on the "L" if you go to the 600 North Wolfe Street entrance of the hospital (the old main entrance).  On Saturdays, parking in the Washington Street Garage is free!  It is a little walk to the Phipps Building. Attached is a map of the Hopkins Medical campus.
 
Johns Hopkins Genetic Counselors Brittney Murray & Rebecca McClellan will give a short presentation on SADS conditions and be available for questions. Literature from the SADS Foundation will also be available. 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.
 
Please RSVP to Andy at alexandandy3@verizon.net. All family members (including children) are welcome. 
Upcoming Events
 
5/21

Novato, CA

6/10-6/11

Napa, CA

6/11

Baltimore, MD

10/21-10/22

HCMA Annual Meeting
Boston, MA



Sincerely, 


The SADS Foundation



Alice, William, Lynn, Jan, Corinne, and Brandon



SADS Foundation | 4527 South 2300 East, Suite 104 | Salt Lake City | UT | 84117