E-newsletter Feb 2012

Here's the latest news from the SADS Foundation!

Now Accepting Applications


The SADS Foundation Courts K. Cleveland, Jr. Young Investigator Awards in Cardiac Channelopathy Research will recognize two outstanding, original academic works in the field of cardiac channelopathies (BASIC SCIENCE category and TRANSLATIONAL/CLINICAL SCIENCE category), which has not been published prior to the 2011 Heart Rhythm Society annual meeting, and/or presented in the prior year by a junior investigator. Applications are due by April 5, 2012. 


PACES Pre-HRS Symposium  


An HRS Pre-Symposium sponsored by the Pediatric and Congenital Electrophysiology Society (PACES) and the SADS Foundation entitled "Sudden Cardiac Death and the Rest of the Family" will take place Tuesday May 8, 2012 from 2:00 to 7:00 PM in Boston, MA.  For more information, please contact Christine Fontanella, Director of Medical Education or call 800-STOP-SAD.  


Read More... Update

We have been alerted by the administrators that a new drug has been added to the list of drugs to avoid for patients with Brugada Syndrome.

The drug procaine (an analgesic) has been added to the list of drugs to avoid for patients diagnosed with Brugada Syndrome. Please be aware that procaine may be added to other drugs such as antibiotics for intramuscular injection (to mitigate the pain following the injection). We advise Brugada Syndrome patients to be watchful when receiving antibiotic injections.

Dad & Kids
SADS 6th International Conference

This year we have expanded the SADS International Conference schedule to include new Friday sessions. On Friday, October 12th we will be offering a special set of break out sessions followed by a family BBQ at the Marriott University Park Hotel in Salt Lake City, Utah.  This allows families who are traveling for the conference to have a chance to meet and greet each other before we dive into a full weekend of sessions.  Stay tuned for the official agenda and session listing, coming soon!

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SADS Foundation Welcomes New Youth Advisor

We are pleased to welcome Brittan Suttphin to our group of youth advisors (link here).  Brittan was diagnosed with CPVT at age 16 after surviving a cardiac arrest at her high school swim practice.  Today she is a student at Claremont McKenna studying Spanish and Biochemistry and plans to become a physician scientist in the future.

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New! "The Heart of the Matter with Dr. Mike"

We hear from patients with unique questions on a daily basis, many times our team is able to answer these questions however sometimes we refer to our medical advisory board for answers.  We've decided to create a special space for these questions and answers on our website in order to facilitate thorough resources for our patients and families.

Questions can be submitted on the SADS website and will be collected once a month, reviewed and presented to our medical advisory board.  We will keep an updated stream of questions and expert answers on our website for reference and invite you all to submit your questions!  A special thanks to the SADS facebook group for their help in spearheading this initiative, stay tuned for the first question and answer.

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Citizen Science: Changing the World of Research for the Better

Research in genomics is expanding and becoming more relevant than ever before.  This research has traditionally relied on large pools of participants but, with the help of advocacy organizations like the SADS Foundation, is changing to a more innovative approach that relies on patient communities to help guide the direction for the future...  Disease advocacy organizations have established biobanks, for example, are using groundbreaking techniques of combining social media and research repositories. Referred to as "Citizen Science", these projects seek to offer a two-way connection between participants and research--as well as facilitating a network of support and resources for participants. Read more about Citizen Science here.

The SADS Foundation's online Pedigree Project was developed in 2010 to facilitate patient-directed research of channelopathies.  We invite you and your family to register today and help create a better future for patients with SADS conditions.

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Wrapping up Heart Month

We've had the largest number of material requests in the history of the SADS Foundation this month! Over 500 SADS Red Kits have been sent out across the country, spreading awareness far and wide. It's not too late to join us, if you haven't ordered a SADS Red Kit, you can still do so by clicking here.


Thanks to all of you who sent in your photos of "going red" for SADS this month. Click here to see the Heart Month Photo gallery. Send your Heart Month photos to and we'll add it to the photo gallery!


 Learn More...
Heart Check Up

CPVT Study Now Enrolling


If you have been diagnosed with catecholaminergic polymorphic ventricular tachycardia (CPVT) and have an ICD, you may be eligible for a new clinical trial of flecainide, an antiarrhythmic drug which may benefit patients with CPVT.

The study is now enrolling and is being led by Dr. Prince Kannankeril, MD, MSCI, at Vanderbilt University Medical Center. For information on getting involved, please contact Anne Maurer(email), Director of Family Support or call 800-STOP-SAD.

Recent SADS Events

SADS Staff and volunteers have been quite busy around the country! On February 10th and 11th, the SADS Foundation traveled to Lancaster, Ohio for two programs with top notch support from our friends at the Fairfield Medical Center. Over 200 medical professionals and over 100 members of the community joined us for these educational events. 
Click here to see photos from Ohio.

Last week, the SADS Foundation was in Florida for the Children's Hospital of Philadelphia's Annual Cardiology Conference.  Several volunteers joined staff members at the exhibit table as well as met with Dr. Ackerman. After the conference, Dr. Ackerman traveled to several local medical education meetings as well.  Click here to see photos from Florida.  Stay tuned for more events to come!


 Learn More...
New on the SADS YouTube Channel

Check out the new videos on the SADS YouTube Channel!  This week, we added a beautifully heartwarming video in memory of Brianna Badger.

Also, see the Denver News coverage of 15-year-old Tanner Milam and his father Thomas,  who saved his live by performing CP
R when he suffered a SCA last year.  Now, Tanner is passionate about spreading awareness of CPR and AEDs in his community and is hosting a heart health fair as part of his Eagle Scout project.

SADS Councils

The SADS Foundation is proud to announce the development of three new councils that will help shape and lead the SADS Foundation to better awareness, research, support and growth. The SADS Foundation is adding a Medical Professionals Council, a Family Support Council, and a Corporate Council. These new groups of talented and dedicated volunteers will add their wisdom to the SADS mission and direction, making us stronger and even farther reaching than ever!
Upcoming Events:

NORD Rare Disease Day: February 29, 2012
American College of Cardiology: March 24-27, 2012
PACES Pre-HRS Symposium: May 8, 2012
Heart Rhythm Society Annual Conference: May 9-12, 2012
National EMS Week: May 20 - 26 , 2012
CPR/AED Week: June 1-7, 2012