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SADS E-NewsletterSeptember 2011
In This Issue
SADS International Conference
Awareness Alert!
Where's Bob?
NY Project
SADS Music Video
SADS Goodie Bags
AZ CERT Update
Medical Educationin Nash
HRS Genetic Testing Guidelines

Upcoming Events    


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

50% off registration now through September 5th!   


SADS Safe Schools Month -September

Contact Adrienne to get involved today! 


SADS Medical Education Seminar -Sep. 7, 2011 -Austin, TX


SADS Medical Education Seminar -Sep. 8, 2011 -San Antonio, TX   


"Where's Bob?" in NYC -Cubs vs. Mets -Sep. 10, 2011 -New York, NY  


Jonathan R. Cowley Memorial Golf Tournament -Sep. 15, 2011 -Midlothian, VA 


Arrhythmias and Athletics Symposium -Sep. 15, 2011 -Santiago, Chile 


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


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


SCAA Annual Meeting -Sep. 23, 2011 -Minneapolis, MN 


SADS Medical Education Seminar -Sep. 23, 2011 -NYC, NY


SADS Medical Education Seminar -Sep. 24, 2011 -Hartford, CT 


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


Brayden's Buddy Golf Tournament -Gilbert, AZ -Nov. 4, 2011


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

Laura or call 800-786-7723.

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Thanks for checking in with the SADS Foundation!  Here's the latest.

SADS Foundation 5th International Conference: Atlanta, GA  October 1-2, 2011 

Discount deadline extended through September 5th!

Due to the unprecedented success and the upcoming Labor Day holiday, we're pleased to announce the extension of the 50% discount for registration through September 5th! 

Register by September 5th and save 50%! 

SADS Safe Schools Month
The SADS Foundation is dedicated to raising awareness all year-long but specifically focuses on schools during the month of September.  We have a kit filled with information on risk, screening, school staff awareness, CPR, and of course, the popular red wristbands. Boy with BooksThis kit is ideal for raising awareness in the school setting and is already being put to use by volunteers across the country.
 Order a SADS Safe Schools kit for your community and help us save lives!

Contact Adrienne at or call 800-STOP-SAD to get involved in this year's SADS Safe Schools campaign.  

Where's Bob? Citi Field, New York
Join Bob Devries of Where's Bob? and SADS families at Citi Field to see the New York Mets take on the Chicago Cubs on September 10th at 1:00 PM.  Families will meet with Bob prior to the game for a photo opportunity and then head to their special section of seats to watch the game together.

RSVP to Laura at or 800-STOP-SAD.

SADS Safe Schools: NY Project

New York HeartNew York state is home to the largest and most diverse population of students in the country.  This year, the SADS Foundation is working on a special version of the annual SADS Safe Schools campaign targeted at the state of New York.  The NY pilot project will help us bring a comprehensive awareness project to other states in 2012.


If you live in New York, we need your help with this special project!  Email Adrienne at to join the New York group and find out how you can get involved locally with SADS Awareness. 

Want to be in a SADS music video?

Sarah LenoreSarah Lenore, a talented singer/songwriter and finalist from the third season of America's Got Talent recently teamed up with the SADS Foundation for her next music video, "Everything is You".  It's an upbeat inspirational song and will feature video clips of children holding hand-written signs with one word describing themselves or their feelings.  We're putting a call out to all our SADS families to take a short video clip, in any format possible (even a cell phone will work!) of your child holding a sign with one word such as "hope" or "happiness" or even a picture of a loved one lost to SADS.  This video will be used for SADS awareness and we're excited to be able to have our patient-families participate!


Please send your 3-10 second video clip to Laura Wall at and do not hesitate to let us know if you have any questions.  


You can read more about Sarah Lenore by visiting her website or find her on facebook

Combined Federal Campaign (CFC)

CFC LogoAre you a federal or state employee? If so, you know about the Combined Federal Campaign (CFC).  When making your pledge, please look for the SADS Foundation under CFC # 56112 -Children's Heart Syndromes & Death Prevention Foundation (SADS Foundation).  We appreciate your donation!  

SADS Goodie Bags

We're seeking donated items such as candy or other fun small items for the SADS goodie bags that will be given to attendees at the upcoming International Conference.  If you are interested in helping us with this project, please contact Laura Wall at or call 800-STOP-SAD.

Add SADS to your Blog or Website
These days personal blogs or family websites are becoming more and more popular as they're a great way for families to keep in touch and share information with each other.  If you happen to mention LQTS or anything SADS-related on your blog or website, we encourage you to add a link to the SADS Foundation.  It's just one more way we can go about spreading our message and saving lives.  Contact Adrienne at if you'd like the SADS logo and link for your blog or website.

Thanks to all of you who are already linked up with the SADS Foundation; working together we're bringing awareness to new heights!
Update from Arizona CERT
Arizona CERT LogoRecently, Arizona CERT added another drug to the list of drugs to avoid for patients with Brugada Syndrome. The popular anti-seizure and bi-polar treatment medication, Oxcarbazepine (brand name Trileptal), has been found to cause adverse side effects in patients with Brugada Syndrome and should be avoided.  For a complete list of drugs-to-avoid for patients with Brugada Syndrome and Long QT Syndrome, visit the SADS website.
SADS Update from Nashville, TN

SADS Medical Education Seminar 

Special thanks to Dr. Prince Kannankeril, Dr. Frank Fish, Dr. Dawood Darbar and Dr. Susan Etheridge for participating and assisting with the coordination of our symposium at Vanderbilt Medical Center and a local dinner program at the Stony River Restaurant.  Area physicians and healthcare professionals attended these events and learned about SADS conditions including LQTS and CPVT and also heard a lecture about the genetics of AFib.  Thank you to GeneDx for providing the SADS Foundation with an unrestricted grant which made this program possible.  


SADS Benefit Concert

Bluebird Benefit ConcertA sold-out crowd at Nashville's famous Bluebird Cafe got to enjoy the amazing talent of world-renowned song-writers, Carl Jackson, Larry Cordle and Jerry Salley in a concert that was held in honor of SADS Foundation Board member, Jackie Kaas-Vines', son Rob Kaas.  Rob passed away from a SADS condition.  Nearly $4,000 was raised at this unique and fabulous concert

Updated Guidelines for Genetic Testing Published in Heart Rhythm
DNAThe "HRS/EHRA Expert Consensus Statement on the State of Genetic Testing of Channelopathies and Cardiomyopathies" was written by a group of national and international heart rhythm experts, including SADS Board and Scientific Advisors, Dr. Michael Ackerman, Dr. Silvia Priori, Dr. Charles Berul and Dr. Arthur Wilde, in collaboration with the Heart Rhythm Society (HRS) and the European Heart Rhythm Association (EHRA).  In this statement, the authors summarize the state of genetic testing for various channelopathies and cardiomyopathies and assign a classification to the utility of each with respect to the relative diagnostic, prognostic and therapeutic impact the genetic test results will have for a patient.  Genetic testing is either considered "recommended"," useful", "may be considered" or "not recommended" depending on the criteria that are met by each individual test.  Of specific note, detailed information and recommendations for genetic testing for LQTS, Brugada Syndrome, SQTS and ARVC for both index and family testing are indicated. The state of genetic testing for out-of-hospital cardiac arrest survivors as well as postmortem testing in sudden unexplained death cases were also reviewed and recommendations generated.   

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