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SADS E-NewsletterFebruary 2011
In This Issue
Lit Review: Q4 2010
From the Lit Review...
Also from the Lit Review...
Save The Date!
February Awareness
Pedigree Project Update
PACES Symposium
SADS featured on
SADS members in ABC news
17th Annual No Ball At All
Medical Examiner/Coroner News

February Quick Poll

Upcoming Events 

Annual Brian Price Memorial Jumpathon 

- Feb 14, 2011 - Dallas, TX

To meet Laura from the SADS Foundation for lunch at this event, contact Laura.   

International Rare Disease Day -Feb 28, 2011 -Worldwide


Lopysnki 5-K Run at Virginia Tech -April 10, 2011 -Blacksburg, VA  


Tommy Marren Beef and Beer -April 30, 2011 -Aston, PA  


PACES (Pediatric and Congenital Electrophysiology Society) Meeting -May 3-7, 2011 -San Francisco, CA   


HRS Annual Scientific Sessions -May 4-7, 2011 -San Francisco, CA   


Fundraiser in Memory of Stephanie Mejias -Spring 2011 -Union, NJ  


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


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


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

details coming soon!  

For information about any of these events, or for assistance planning your own special event, contact Laura or call 800-786-7723.

SADS Young Investigator Award

One of two 2010 Award Recipients, Edward Glasscock.

Applications are now being accepted for the 2011 SADS Young Investigator Awards in Cardiac Channelopathy Research. 

Climb to Conquer SADS

Plans are coming together for the 2011 Annual Climb to Conquer SADS.

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!

Find SADS on Twitter!
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Join Our Mailing List
Check out the latest from the SADS Foundation!

The SADS literature review for the 4th quarter of 2010 is now available for you!  In this edition we have highlighted a couple articles we found interesting, be sure to visit our website to see the full literature review.

This study was designed to assess the clinical course and to identify risk factors for life-threatening events in patients with long-QT syndrome (LQTS) with normal corrected QT (QTc) intervals.  Current data regarding the outcome of patients with concealed LQTS are limited.


Genotype-confirmed patients with concealed LQTS make up about 25% of the at-risk LQTS population. Genetic data, including information regarding mutation characteristics and the LQTS genotype, identify increased risk for ACA or SCD in this overall lower risk LQTS subgroup.


Goldenberg I, Horr S, Moss AJ, Lopes CM, Barsheshet A, McNitt S, Zareba W, Andrews ML, Robinson JL, Locati EH, Ackerman MJ, Benhorin J, Kaufman ES, Napolitano C, Platonov PG, Priori SG, Qi M, Schwartz PJ, Shimizu W, Towbin JA, Vincent GM, Wilde AA, Zhang L.

J Am Coll Cardiol. 2010 Dec 28;57(1):51-9.

PMID: 21185501


See the full literature review. 

Despite the significant decline in coronary artery disease (CAD) mortality in the second half of the 20th century,  sudden cardiac death (SCD) continues to claim 250 000 to 300 000 US lives annually.  In North America and Europe the annual incidence of SCD ranges between 50 to 100 per 100 000 in the general population.  Because of the absence of emergency medical response systems in most world regions, worldwide estimates are currently not available.    


However, even in the presence of advanced first responder systems for resuscitation of out-of-hospital cardiac arrest, the overall survival rate in a recent North American analysis was 4.6%.8  SCD can manifest as ventricular tachycardia (VT), ventricular fibrillation (VF), pulseless electric activity (PEA), or asystole. In a significant proportion of patients, SCD can present without warning or a recognized triggering mechanism. The mean age of those affected is in the mid 60s, and at least 40% of patients will suffer SCD before the age of 65.4  Consequently, enhancement of methodologies for prediction and prevention of SCD acquires a unique and critical importance for management of this significant public health issue.


Fishman GI, Chugh SS, Dimarco JP, Albert CM, Anderson ME, Bonow RO, Buxton AE, Chen PS, Estes M, Jouven X, Kwong R, Lathrop DA, Mascette AM, Nerbonne JM, O'Rourke B, Page RL, Roden DM, Rosenbaum DS, Sotoodehnia N, Trayanova NA, Zheng ZJ.

Circulation. 2010 Nov 30;122(22):2335-48. PMID: 21147730


See the full literature review. 

Save The Date!

The SADS Foundation's International Conference will be October 1-2, 2011 in Atlanta, GA.  Details coming soon!  If you're interested in assisting the SADS Foundation with this conference, contact Laura or call 800-786-7723. 

February is American Heart Month

Raising awareness of heart conditions is the focus for nationally appointed American Heart Month. SADS has put together a special SADS Red Kit in conjunction with the national campaign. 

The SADS Red Kit is perfect for raising awareness in the office, your child's school class, or even an athletic team! 


It's not too late to order your SADS Red Kit!  To order your kit, contact Adrienne or call 800-786-7723.

Thanks to all who have registered in the Pedigree Project! So far 350 people have registered! Many families have been helped with the "next step" in expanding their family pedigree. Families are having success by informing relatives - who have not obtained screening for years - about the lower cost of genetic testing. Testing can be capped at $100 or $500, depending on the company and can even be as low as $350 without insurance!
family treeRegister today!

What is your next step? Have you registered all 1st degree relatives (children, siblings, and parents) of the diagnosed person(s) in your immediate family - whether or not they have been screened or diagnosed!    Do it today!

If you have any questions please feel free to contact Joanne Robinson or call 800-786-7723.


The SADS Foundation is working with PACES on their annual pre-HRS meetings titled " Difficult management issues in the young patient having a channelopathy". There will be six sessions, each focusing on a separate aspect of the management of young persons having a channelopathy. The content of this symposium is driven by the recognition that treatment strategies in these patients vary widely among practitioners and are often not especially evidence-based.


Click here for more information and to register for this symposium.


Today only, is featuring the SADS Foundation with Great on their website.  This is part of their efforts to support American Heart Month and join us in raising awareness of heart conditions this month.  Check it out!  Take a minute to visit and click on the SADS logo.  


Special thanks to and Great!  

Last week a story was published in the United Kingdom's Daily Mail about a young girl who suddenly passed away in Wales.  A few days later, ABC also saw the story and decided to run a follow-up.  ABC reporter, Laura Salahi, contacted the SADS Foundation and spoke with ALice Lara who provided some information as well as contacts for a physician expert and a patient family. Alice referred her to Dr. Mike Ackerman and the Lucatuorto family.


The story came out on Monday and features quotes from both SADS Board President, Dr. Mike Ackerman, as well as new Board member Anthony Lucatuorto, whose daughter Annie has been diagnosed with Long QT Syndrome.  Click here to read the story.

SADS 17th Annual No Ball At All Campaign

Be a part of this annual campaign by joining the No Ball At All Dinner Committee.  Contact Laura or call 800-786-7723 to join the committee and help build on this meaningful tradition. 

Lately there has been a great deal of news coverage regarding the current Medical Examiner/Coroner system in the United States.  Several news organizations include NPR, PBS/Frontline, UC Berkley Graduate School of Journalism, and ProPublica have collaborated on several news articles including radio and television pieces. 


In response to this news, and building upon our current outreach program, the SADS Foundation has written a statement in hopes of creating a national dialogue not just about these articles but about key elements that need to be considered for SADS patients and families.


Read SADS recommendations for post-mortem practices in sudden, unexplained death in young people. 


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