20th Anniversary Campaign
Heart Month
Go Red Day!
Rare Disease Day
SADS Benefit Concert in TX
Sudden Death Prevention Guidelines
Email Subscription Changes
Florida Volunteers Needed!
AHA Guidelines Not Followed
Medical Seminars


Girls (and Guys) Night Out -January 26, 2012 -Winnetka, IL


Go Red Day -February 3, 2012 -Nationwide 


-February 3, 2012 -Salt Lake City RSVP Today! 


SADS Medical Education Seminar -February 9, 2012 -Cleveland, OH


SADS Medical Education Seminar-February 10, 2012  -Columbus, OH 


Community Awareness & Education Event -February 11, 2012 -Lancaster, OH


12th Annual Jumpathon -February 14, 2012 -Dallas, TX


16th Annual CHOP "Update on Pediatric and Congenital Cardiovascular Disease" -February 22-26, 2012 -Orlando, FL


PACES Pre-HRS Symposium: "Sudden Cardiac Death & the Rest of the Family" -May 8, 2012 -Boston, MA


Connor Senn Memorial Soccer Tournament & Symposium -May8-9, 2012 -Columbus, Ohio 


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

The SADS Foundation 6th International Conference
October 13-14, 2012 
Salt Lake City, Utah 

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Here's the latest news from the SADS Foundation! 

The SADS Foundation Celebrates 20th Anniversary 
This year marks the 20th Anniversary of the SADS Foundation and to celebrate this achievement, we have planned an entire year of exciting activities!  Dr. Michael Vincent, who established the SADS Foundation 20 years ago, has a special message for all of you about this momentous occasion, click here to view the message.

To kick off the celebration, we're highlighting 20 years of stories.  The stories we receive from families convey such strength, endurance, and spirit and really help us tell the world what it is like to have a SADS condition.  Join the SADS community of stories by submitting your story or video today!


Click here to read some of the recent stories we've received.  If you have any questions or would like help writing your story, contact Anne Maurer at or  800-STOP-SAD.
Next week marks the beginning of Heart Month, which is nationally dedicated to raising awareness of heart conditions.  All across the nation families, friends, and patients will join in raising awareness of heart conditions.  You can help spread the message in your community by ordering the SADS Red Kit, complete with information for the general public and now a special medical awareness piece, too!  Get your FREE Red Kit today and help raise awareness.  That's not all!  All red kit orders come with a special coupon code for a discount on the new SADS Red T-Shirt.  Wear your T-shirt on Red Day, Friday February 3rd, to show your support and raise awareness.   
This year to help bring the message to even greater heights, the SADS Foundation is hosting an advocacy day at the SADS office (Salt Lake City, Utah).  Volunteers will meet at 8:30 AM to pick up their FREE SADS Red T-shirt, enjoy a light breakfast, and a short advocacy briefing before we head to the state capitol to spread our message.  This event is free of cost; please RSVP by contacting Adrienne Butterwick at or call 800-STOP-SAD.

Don't live nearby? You can host a SADS Go Red Advocacy Day in your own city!  Contact Adrienne for information on setting up an advocacy day in your city.  
Join SADS volunteer, Andy Golden, at the National Institute of Health's Rare Disease Day on Feb. 29th and the Food and Drug administration's Advocacy Day on March 1st in Washington, D.C.  There will be a table with SADS information and displays and volunteers are needed to help answer questions and hand out materials at the table.  If you're available and willing to help out, contact Adrienne at or call 800-STOP-SAD.  Thank you to Andy for spearheading this awareness initiative!
The esteemed and talented soprano vocalist, Carol Meyer Willingham, will perform in a concert on February 12th in Salado, Texas. Works by Fauré and Poulenc, as well as songs made famous by Edith Piaf, will be featured. Carol will be accompanied by Dr. Cameron Hofmann, a collaborative pianist, organist and vocal coach on the music faculty of Baylor University.

All proceeds from the recital will go to The SADS Foundation in memory of Carol's nephew, Brett Anderson who passed away in 2009 due to a SADS condition.

New Sudden Death Prevention Guidelines
New sudden death prevention guidelines will be published In the February 2012 issue of the Journal of Athletic Training.  A new position statement was issued by the National Athletic Trainer's Association entitled "Preventing Sudden Death in Sports," in early December at the Third Annual Youth Sports Safety Summit in Washington, D.C.  Sudden cardiac arrest is addressed in the statement, along with 9 other health conditions that can cause SCD among athletes.  While concussion legislation has passed in 36 states, concussions are not the only problem in youth sports. In fact, the leading cause of death from youth sports is sudden cardiac arrest.
The "Preventing Sudden Death in Sports" position statement includes the following: 
Sudden Cardiac Arrest
  • Recognition is key to treatment: Sudden Cardiac Arrest (SCA) should be suspected in any athlete who has collapsed and is unresponsive.
  • Advance preparation is critical to survival once SCA has occurred: Public access to automated external defibrillators and established emergency action plans greatly improve the likelihood of survival.
  • Access to early defibrillation is essential: A goal of less than three to five minutes from the time of collapse to delivery of the first shock from an AED is strongly recommended. 
The new position statement incorporates the 2010 American Heart Association CPR guideline updates, with an emphasis on chest compressions and AED application as soon as possible. For information about the position statement, the Youth Sports Safety Summit and the Youth Sports Safety Alliance, click here.
New! Fine Tune your SADS E-mail Subscription
In an effort to better serve the ever growing population of patients, professionals and families we work with, we have created three different email groups.  You can now select which communications you wish to receive based on what your interests are.  Click the "subscription" link at the bottom of this email to see the changes and make sure you don't miss out! 
Orlando, FL area Volunteers Needed
The SADS Foundation will be attending and exhibiting at the Children's Hospital of Philadelphia 16th Annual Update on Pediatric and Congential Cardiovascular Disease in Orlando, Florida on February 22-26, 2012.
We need volunteers to assist answering questions and handing out material at this event.  If you're in the area and are interested in volunteering with SADS staff exhibiting at the conference, please contact Laura Wall at or call 800-STOP-SAD. 
Few Follow AHA Recommended Guidelines for Pre-Sports Participation Exams in Student Athletes
Disappointing statistics were presented at this year's American Heart Association Scientific Sessions in Orlando, FL in regard to the assessment of sudden cardiac death risk in student athletes.  It was determined that less than 6% of doctors fully follow the national guidelines established to assess the risk for high school athletes during their pre-participation sports physical exam.  

Of the more than 1100 family doctors and pediatricians surveyed, less than half of the physicians and only 6% of athletic directors, were even aware of the national guidelines published in 1996 by the AHA and then re-affirmed in 2007.  The guidelines make recommendations for physical exam elements such as listening to the heart and checking the athlete's blood pressure and also include 8 medical history questions. 
Please visit the SADS Foundation website to view our questionnaire that can be used during pre-participation sports exams.  It is imperative that student athletes answer questions about the warning signs and symptoms for SADS conditions that can lead to sudden cardiac death and that any family history of SCD is obtained.
Upcoming SADS Medical Education Seminars

The SADS Foundation's Medical Education program is off and running for 2012, beginning this February with professional education seminars in Ohio and Florida. Dr. Michael Ackerman will be speaking at several locations on February 9th and 10th in Cleveland and Columbus Ohio. Friday, February 10th, he will also lecture about SADS conditions at a CME program at the Fairfield Medical Center in Lancaster, OH. On Saturday, February 11th, both Dr. Ackerman and Dr. Pope, a local Ohio physician will speak at a community awareness event "Things Every Parent Should Know about Sudden Cardiac Arrest in Youth". This is a free seminar open to the public and sponsored by The SADS Foundation, The Snider Community Heart Watch and Boston Scientific. Special thanks to Bob Williams and his team at the Fairfield Medical Center for all of their hard work pulling both the CME and community events together!

Plans are also underway for medical professional seminars in the Miami, FL area. More details to follow.

This Valentine's Day, the Sheldon School in Dallas, TX will hold the 12th Annual Jumpathon in memory of Brian Price.  This is a great event where hundreds of kids jump rope, raising awareness and funds for SADS and has been one of the longest running and most successful fund-raisers in SADS Foundation history.  The Jumpathon is in honor of Brian Price (2/15/82-1/31/98) who passed away at 15 years old from Long QT (a SADS condition) and is planned by his grandmother, Betty Glasheen, and mother, Kathy Price.


Alice, Laura, Christine, Anne, Sarah, Adrienne, Amy and Brandon

The SADS Foundation