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 
 

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. 

Early bird registration open now!
Click here to register at a reduced rate today!
March 2016: In This Issue
TSA Day in Washington, DC 
 
Parent Advocate Courtney Waller traveled to Washington DC, during Rare Disease Legislative Advocates' Rare Disease Week and Lobby Day. The conference included Rare Disease Day at the National Institutes of Health, Advocacy Conference, Documentary Screening and Lobby Day on Capitol Hill. 
 
Pictured with fellow Wisconsin Rare Disease Advocates and Speaker of the House Paul Ryan, Lobby Day was spent in one-on-one meetings with Congress members and Senators to ask for support of legislation aimed at the Rare Disease Community. 
 
Courtney's daughter was diagnosed with LongQT-8 (Timothy Syndrome) in 2013.  
Thanks to Volunteer Jasmine 
 
The SADS Foundation extends a huge thank you to SADS volunteer Jasmine Wylie. Since being diagnosed with Long QT in 2008, Jasmine has taken it upon herself to find out everything she can about Long QT and to reach out to others who also are affected. Jasmine is one of the administrators of the closed Facebook support group Long QT Syndrome, speaks publicly to spread awareness, tells stories of others with SADS with her paintings, and volunteers whenever possible for the SADS Foundation such as manning our booth at the HRS Scientific Sessions in San Francisco this May.

Check out the following links to read more about this extraordinary lady and SADS family member.

Eight Year Old Beats Heart Condition
with a Bow and Arrow 
 
Jeffrey Paes is prohibited from doing most other sports because he has LQTS 1, but he finds his calling in archery.In the last few months, Gander Mountain, a sporting goods store with an archery range, has become Jeffrey's second home-he comes here every day after school, on weekends, and he is on a first name basis with the staff.
 
"He's absolutely professional," says an Archer watching Jeffrey Paes shoot, "One time I was here from breakfast all the way to dinner-we skipped lunch," he said with a laugh.   

Read the full story here.
  
Read the Latest Recommendations for Competitive Athletes with Cardiovascular Abnormalities
SADS Foundation Scientific Advisor Revisits
Long QT Syndrome Screening 
Tristani-Firouzi M1.
Author information: 1Division of Pediatric Cardiology, 81 N. Mario Capecchi Drive, Salt Lake City, UT, USA; Nora Eccles Harrison Cardiovascular Research and Training Institute, University of Utah School of Medicine, 95 S. 2000 E, Salt Lake City, UT, USA. Electronic address: Martin.Tristani@utah.edu.

Abstract

The incidence of long QT syndrome (LQTS) is generally believed to be approximately 1:2500 individuals. Given the relatively common nature of this disorder, the observation that sudden cardiac death is often a presenting symptom and the highly treatable nature of the disease, LQTS meets common criteria for the design of a universal screening program. In spite of multiple lines of evidence (international experience, cost-benefit simulations) suggesting that universal screening for LQTS is feasible and effective, there remains considerable debate and controversy surrounding the implementation of universal LQTS screening in the United States. Here, we describe some of the challenges and potential novel solutions to the practical implementation of LQTS screening.
Copyright 2015 Elsevier Inc. All rights reserved.

PMID: 26355713 [PubMed - in process]  
No Ball at All 2016 
 
The SADS Foundation is celebrating the 22nd Anniversary of No Ball at All! This year, we are grateful to the Solana Family for allowing us to remember their son and brother Gray who passed away just over a year ago from a sudden cardiac arrest. The Solana Family designated the SADS Foundation as a beneficiary of donations made in Gray's memory at this time.
 
Now the Solana Family once more asks that you please contribute whatever you can to the SADS Foundation through No Ball at All 2016 to continue to support families and save young lives just like Gray's through awareness and education.    
 
Please visit  www.sads.org/Donate-NoBall to donate online. 
Fabulous Fundraisers 
 
The SADS Foundation applauds our volunteer fundraisers who through their dedication and commitment to our mission have been supporting us for several years. The following events are examples from the past few months.
 
The 11th Annual Brittany's Trees had its best year ever boasting 18,000 trees lighted in Carol Stream by Jim Guthrie, Tony Valene and team and surrounding areas as well as Libertyville by the Lentino Family and team!!

The 16th annual Brian Price Memorial Jumpathon was held February 12 and led by Betty Glasheen at Shelton School in Dallas - one of our oldest volunteer fundraising traditions! Everyone had loads of fun at the Sweet 16 on February 25 hosted by Jeanne Balsam in Winnetka in memory of Rebecca Righeimer.
 
Additionally, the SADS Foundation congratulates two new volunteer fundraisers for first-time events that are sure to become yearly happenings raising funds and awareness for SADS. More than 40 participants danced for our mission at a Zumbathon for Scarlett Manelis led by Sandy Anderson on February 26 in Rochester.

The Solana Family held the 1st Annual Gray Solana Memorial Roundball Rumble Basketball Tournament with local teams playing the sport Gray loved.
 
To find out more about hosting your own volunteer fundraising event, please contact Jan at 801-272-3023 or jan@sads.org

Join in the fun!!  
SADS Foundation at HRS 
 
The SADS Foundation will be incredibly busy this May 3-7 at the Heart Rhythm Society Scientific Sessions in San Francisco, California. Just take a look at our daily activities!
 
TUESDAY - MAY 3
SADS Foundation exhibiting at the PACES Pre-Conference Research Meeting
at Stanford University
 
WEDNESDAY - MAY 4
SADS Foundation exhibiting at HRS Scientific Sessions - Booth #743        
 
Working Breakfast - SADS Foundation Scientific Advisors  
 
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
8 a.m. -9:30 a.m. - 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. Informed Medical Decisions, 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
12:15-1:15 p.m. - Session ME06 - Meet the Experts: Lessons Learned From the SADS Experience
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  
Staff Travels 
 
Alice Lara, CEO, and Lynn Johnson, Director of Family Support traveled to Miami to staff the SADS booth and attend the Nicklaus Children's Hospital/Miami Children's Health Foundation Conference on "Wolff-Parkinson-White Syndrome and Other Causes of Sudden Death in the Young" on February 19-20th. Many SADS Foundation Scientific Advisors and Board Members were among the speakers. Topics included prevention of Sudden Death, a debate on ECG screening, when to allow athletes to return to play, and ICD Implantation.
 
After the Miami Conference, Alice attended the National Association of Medical Examiners (NAME) Interim Scientific Meeting in Las Vegas for a panel on sudden death in the young.
Upcoming Events
 
4/2-4/4
Chicago, IL
4/30 Fredericksburg, PA
5/3Pediatric and Congenital Electrophysiology Society
Pre-Conferences and Annual Meeting
San Francisco, CA
5/4-5/7
San Francisco, CA
5/13-5/15
Salt Lake City, UT

Sincerely, 

The SADS Foundation

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