New SADS Logo
SADS E-NewsletterMay 2011
In This Issue
New Genetic Testing Guidelines
New to the Library
SADS International Conference
Advocacy Update
Young Investigator Award Winners
2011 Climb to Conquer SADS
CPR & AED Awareness Week
Perfect for Father's Day
S-ICD: Alternative to ICDs
May Quick Poll
Sunburst Tell us about your favorite kids camp!

Upcoming Events 


National CPR/AED Awareness Week -June 1-6, 2011 


Shannon Kiss "Celebrate Wayne and Conquer SADS" Dinner -June 3, 2011 -Atlanta, GA  


Keith L. Young Memorial 5-K Run -June 11, 2011 -Green River, WY     


 Fundraiser in Memory of Stephanie Mejias -June 23, 2011 -Union, NJ     


Climb to Conquer SADS -July, 7-10, 2011 -Washington State 


"Where's Bob?" in NYC -Cubs vs. Mets -September 11, 2011 -New York, New York  


6th Annual Christie's Heartoberfest -Ballston Lake, NY -Sep. 17, 2011


14th Annual Layton Oktoberfest -Colorado Springs, CO -Sep. 17, 2011 


 "Tri" for Abbey Triathlon in memory of Abbey Wambach -Sep. 24, 2011 -Rockville, SC


SADS International Conference -Oct 1-2, 2011 -Atlanta, GA

50% off registration now through September 1st!  

For information about any of these events, or for assistance planning your own special event, contact

Laura or call 800-786-7723.

17th Annual No Ball At All
No Ball 2011

Contact Laura or call 800-786-7723 to get involved!

Local Network Participation Survey
Want to network with other SADS families? Take the survey today!

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Check out the latest from the SADS Foundation!
New Guidelines on Genetic Testing for Heritable Arrhythmias

At the Heart Rhythm Society's 32nd Annual Scientific Sessions, an expert panel of physicians and researchers, co-chaired by Michael Ackerman MD, Ph.D and Silvia Priori MD, Ph.D, presented a paper on consensus guidelines for genetic testing of SADS conditions.  Genetic testing has come a long way since the first cardiomyopathy and channelopathy genes were discovered in the 1990s and the future is looking quite bright.  These guidelines are the beginning of a long-term look at genetic testing recommendations and best practices.  DNAThe guidelines contain detailed recommendations for six channelopathies, five cardiomyopathies, out-of-hospital cardiac arrest survivors, and post-mortem testing in sudden death cases.  The utility of genetic testing is different for each condition, which is why these guidelines are specifically important to physicians who work with several of the conditions. Other elements of the guidelines include the need for proper evaluation of genetic tests via counseling by either the physician or a genetic counselor and a the need for a more thorough investigation into sudden death in young people.  As medical advances continue to be made, these guidelines will be increasingly important and thus will continue to be re-evaluated by the panel.  This paper will be published later this summer. 


New in the SADS Library

Have you checked out the Library section of lately? Be sure to stop by and check out the new addition to the Library--Youtube videos! Many of these great educational and public awareness videos come from our northern partner, SADS Canada. Videos like these are great for giving presentations or helping to tell your friends and family about SADS conditions.  Feel free to share!


SunburstAlso new to the Library is a section for Kid's Camps.  These camps are specifically focused on children with heart conditions or implanted devices and their siblings.  We will be updating this list as we learn about more camps, but you can help! Does your child attend a Kid's Camp every summer?  Even if the camp is not specific to a medical condition, we'd still love to hear about it.  Take this short survey to tell us about your Kid's Camp recommendations.

The 5th International SADS Foundation Conference is an event that you won't want to miss!
  • Conference session topics include:
    • Risk stratification: what have we learned?  
    • ICDs and the latest in treatment options 
    • State of pre and post mortem genetic testing 
    • AED Sudden Death Safety Net
    • CPVT vs. LQTS vs. SQTS: diagnosing channelopathies 
    • LQTS and Brugada drug lists: what do they mean? 
  • Special SADSConnect activities (ages 9-18) on both Saturday and Sunday 
  • Saturday night Gala 20th Anniversary and Volunteer Awards Dinner-hosted by Dr. Michael Vincent, the Founder of the SADS Foundation. 

Registration is 50% off until September 1st!  

Register your family today

Kara EvansWe are excited about our new intern, Kara Evans, working with us on the Pedigree Project this summer. Kara recently graduated from Brigham Young University with a B.S. in Public Health. Kara has been passionate about health ever since she was young and hopes to assist others achieve their optimal health and ultimately help to save lives.  Kara has been busy making phone calls and sending emails, you can look forward to hearing from her soon!   


The Pedigree Kit is designed to help you get started with gathering family history to enter in the Pedigree Project.  This project is a vital tool in helping to better understand and further research with inherited arrhythmias. You can order a Pedigree Kit by calling 800-STOP-SAD or email Kara.

Advocacy Update: Rural Health Programs

It's been a busy week on Capitol Hill for health policy. We've sent two action alerts asking advocates to contact their Senator to support funding for rural health programs including the rural AED program.  Thanks to all those who have taken the time to call their Senator.  Today is the last day for Senators to sign the Rural Health Caucus' letter of support--click here to take action NOW!

SADS Young Investigator Award Winners Announced at PACES Symposium
Alice & Charlie

Alice Lara and Dr. Charles

Antzelevitch at HRS 2011

The SADS Foundation was in San Francisco May 2-7, 2011 for the 32nd Annual Heart Rhythm Society Scientific Sessions.  The meetings began with the SADS co-sponsorsed Pediatric and Congenital Electrophysiology Society (PACES) pre-conference meeting.  SADS distributed materials to physicians and other health care providers and attended lectures by expert speakers and panelists.  Cardiac channelopathies and sudden cardiac death were among the topics discussed and speakers included several members of SADS Scientific Advisory Board. 

The PACES educational seminar spanned two days and concluded with a dinner where the SADS Foundation presented the annual Young Investigator in Cardiac Channelopathies Awards. 
YI Award Winner

Dr. Charles Berul presenting the award at PACES dinner

The award in the basic science category went to Ahmad Amin of The Academic Medical Center of Amsterdam for his paper titled "Functional Variants in the 3' Untranslated Region of the KCNQ1-Encoded Kv7.1 Potassium Channel Strongly Modify Disease Severity in Patients with Type 1 Long QT Syndrome". The award for translational/clinical science category went to Peter Aziz of The Children's Hospital of Philadelphia for his paper titled "Genotype and Mutation Site Specific QT Adaptation during Exercise, Recovery and Postural Changes in Children with LQTS".  Congratulations to both winners for their outstanding efforts in cardiac channelopathy research.  


Are you looking for a unique way to support the SADS Foundation? Join us and sponsor a climber for the 2011 Climb to Conquer SADS! It's an easy and fun project for your family...and will make a huge difference in the number of people we can reach.

 Climb to Conquer SADS banner

CPR & AED Awareness Week: June 1-7, 2011

HeartCPR and AED awareness week is just around the corner. Why not plan a CPR/AED training for your office, family night, school group, or child's class?   All across the country local American Red Cross chapters will be holding CPR courses, to check for one in your area visit their website.   You can even hold a virtual CPR/AED training by downloading one of the instructional videos (also available in Spanish) from our youtube channel.  Encourage everyone you know to get trained in CPR/AED response--together we can create a safer community for all citizens! 

MetalpressionsOur new friends at Metal Pressions and Andreas Argentinis loved the help and advice they got from the SADS Foundation. Now they have agreed to donate 25% of all SADS sales back to our life-saving programs! If you're looking for a unique present for graduation, Father's Day or just to say, "I love you" - be sure to look here first.  You can also find them on Facebook 

S-ICD: A Promising Alternative to ICDs
EPA new device called the subcutaneous implantable cardioverter defibrillator (S-ICD) system has recently been studied by a group in the Netherlands.  The multi-center Dutch study was presented at the Heart Rhythm Society's 32nd Annual Scientific Sessions. In the study, the S-ICD system was 100 percent effective in converting induced ventricular fibrillation (VF) through appropriate shock.  The study findings show that the S-ICD system is comparable to the conventional ICD system and is a viable option for patients without pacing needs.  The S-ICD system is minimally invasive compared the conventional system in that it does not require direct access to the heart.  This leads to fewer complications for patients and can easily be explanted if needed.  The S-ICD system has been accepted in Europe and is currently under review by the U.S. Food and Drug Administration for use in the United States.

Alice, Laura, Christine, Adrienne, Sarah, Amy and Bonnie
The SADS Foundation