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October 2014

October, 2014 - In This Issue:
Sudden Cardiac Arrest Awareness Month
October is National Sudden Cardiac Arrest (SCA) Awareness month. Approximately 400,000 Americans die suddenly and unexpectedly from a SCA every year. About 7,000 of those deaths are children under 18 years old (Morbidity and Mortality Weekly Report, 2002). This makes SCA the third most common cause of out-of-hospital deaths in the United States (American Heart Association, 2009).

Help raise awareness about SCA in your communities and protect our children by getting your school accredited as a Heart Safe School. For more information about Heart Safe School Accreditation visit or email
Talking More Than Just Turkey:
Thanksgiving is National Family Health History Day

Thanksgiving is a time when many families come together to celebrate traditions, eat dinner, and talk about what they are thankful for. It's also National Family History Day, a day designated by the US Surgeon General that encourages Americans to share a meal and their family health history. Try to reach out to members who are well aware of the condition as well as the ones who might not be aware of a potentially dangerous genetic conditions in the family. If you have not reached out to all of the members of your family tree, now is the time.

The SADS Foundation hopes you'll take a few minutes to talk with your relatives this holiday season, obtain health histories with our Pedigree Kit, and help them through the steps of screening for SADS condition. The Pedigree Kit contains information on family history, risks, and testing, as well as easy to fill out forms for creating a family's complete health history. SADS-related sudden death is preventable, but only when every family member is informed. The Pedigree Kit can be found on our website here or contact Matt Siemionko at or 800.STOP.SAD for print materials to be sent to you directly. Have a safe and happy holiday!
Energy Drinks and SADS Conditions

The SADS Foundation posed the question to our scientific advisors (leading national and international experts in the field of cardiac channelopathies) as to whether energy drinks are safe for consumption by channelopathy patients. Since there is very little scientific research that has been done on this topic to present an evidence-based answer their response was based upon expert consensus.

The decision to discourage the use of energy drinks was unanimous. Some papers and articles were cited regarding the sudden cardiac death of young individuals who were later found to have a potentially disease-causing mutation in the SCN5A gene, or LQT patients whose condition was unmasked by the consumption of energy drinks.  For their LQTS patients they agree that caffeine in moderation is fine, they advise against drinking energy drinks.

All of our experts tend to agree that there is an obvious lack of scientific data exists on this topic and feel it is worth further scientific study.  The consumption of energy drinks and caffeine within 24 hours of death will be requested to be reported in the death investigation by the Sudden Death in the Young Registry (SDY).  This data, along with DNA samples will be available to researchers through the NIH in the coming years, allowing them access for further study.    Our hope is that in a few years, there will be additional scientific data to support our expert consensus.
SADS Safe Schools
We would like to thank everyone who participated in SADS Safe Schools this year! Thanks to our amazing volunteers, we were able to reach over 200 school nurses and teachers, and over 100 coaches. More importantly, it was reported that 92% of our children with a SADS condition either has an individualized care plan in place at their school or will shortly. Thank you for all your efforts to protect our children this school year, we could not have done it without you! 
Progress with the Medical Examiner Community

SADS staff members attended the National Association of Medical Examiners (NAME) annual conference last month. We were thrilled to hear about even more advances since last year's passing of the position paper  on retaining postmortem samples appropriate for genetic testing. During the annual business meeting, NAME members voted in favor of adding this to their autopsy standards. This is a huge leap forward and we are proud to have been instrumental in pushing for this addition to their standards. In collaboration with the NSGC Cardiac Special Interest Group, we continue to pursue our national mailing campaign to all medical examiners and coroners offices, including a magnet that details this proper sample collection that can be kept on their laboratory refrigerator or freezer. 
It's almost that time of year again.  

Brittany's Trees is a neighborhood tradition, and now a nationally recognized organization that celebrates the holidays and memory of Brittany Valene who died in February 2005, just days before her ninth birthday, of Long QT Syndrome that her family and doctors thought was being controlled by medication.

Brittany's passing weighed heavy on the hearts of many, including her neighbors in Kingsport Ridge. Wanting to keep Brittany's memory alive, Kingsport Ridge resident Jim Guthrie and several other community members decided to honor her by placing Christmas trees in their front yards. "She loved Christmas," says Ruth Groh, "We used white lights to remember Brittany, as she was our angel, shining down on us."

That first year, 22 trees were placed on neighborhood lawns. It was the beginning of the Brittany's Trees fundraiser, which sells Christmas trees to benefit the Sudden Arrhythmia Death Syndrome Foundation. Last year, 1,500 trees were delivered! "This is our 10th rewarding and fulfilling year," says Coordinator Jim Guthrie, "We sold out of trees in the last four years, so please get your orders in early."

To support the SADS Foundation through Brittany's Trees, you may purchase a tree or purchase a 2014 Brittany's Trees long sleeve purple shirt at Trees will be delivered, set-up and decorated beginning the Friday after Thanksgiving. Tree delivery is limited to towns within 25-30 miles of Carol Stream.

Catch the spirit!!!
Unlocking Life's Code: A Genetic Exhibition

In 2012, the National Human Genome Research Institute (NHGRI) wanted to honor and celebrate two anniversaries in the science of genetics: the 60th anniversary of the discovery of the "double helix" of DNA, and the 10th anniversary of the completion of the Human Genome Project. In one of the largest partnerships with the Smithsonian Museum of Natural History, NGHRI launched an exhibition called Unlocking Life's Code, an interactive, educational exhibit that examines how genetics impact society, health, and the natural world.

The exhibit was initially installed in Washington, DC, but was designed to tour the country over the next four years. It is currently installed at the San Diego Reuben H. Fleet Science Center, but is set to tour San Jose, Saint Louis, Portland, and Milwaukee, with other cities and locations to come. For more information in this fascinating exhibit on genetics in our daily lives, click here for more information.

The Fests!
Bill and Sally Layton at Oktoberfest
The SADS Foundation sends huge THANK YOU'S to two of our longest-running awareness and fundraising events: Bill and Sally Layton's Oktoberfest in Colorado in honor of Sally, and Craig and Melissa Tolosky's Heartoberfest in New York in memory of their daughter Christie. This past September, they both had their most successful years ever with all proceeds benefiting the SADS Foundation! Should anyone ever want to start their own Octoberfest, contact the SADS Foundation, the Laytons, or the Toloskys to help get started. Cheers to all of you!

Christie's Heartoberfest

All for Al 
November 2, 2014
Chicago, IL 
Brittany's Trees
November 29, 2014
Carol Stream, IL

Milk and Cookies 
December TBD, 2014   
Charlotte, NC   

3nd Annual Coconut Creek Luminary Night

December TBD, 2014 

Ft. Meyers, FL    


Celebrate Wayne
December 12, 2014 
Atlanta, GA 

October 23, 2014
Nashville, TN 
Medical Seminars  

October 30, 2014 
Toronto, Canada  

November 12, 2014 
Kansas City, MO 

November 17, 2014 
Chicago, IL 

December 5, 2014 
Phoenix, AZ 


The SADS Foundation

Alice, Christine, Matt, Jan, Jenny, Grace, and Brandon.


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