SADS 20th Anniversary Logo
 
Greetings!
Get Ready to GO RED!

February, also known as Heart Month, is dedicated to raising awareness about heart conditions and increasing public knowledge about prevention nationwide. 
 
To kick it off Friday, February 1st, 2013 is National Wear Red Day and SADS has joined the movement!  
Medications
Drugs-to-Avoid List Update

 

Recent information from the researchers at Credible Meds (formerly known as Arizona CERT/QT Drugs):
 
On December 30, 2012, the FDA approved a new drug for the treatment of multi-drug resistant tuberculosis, bedaquiline (Brand name Sirturo). Because the FDA-approved label includes a black box warning that it can cause QT prolongation, we have added it to the list of drugs with "possible risk of torsades de pointes". 
 
Based upon our analysis of emerging evidence reporting QT prolongation, olanzapine has been added to the list of drugs with "possible risk of torsades de pointes".  The most common brand name is Zyprexa, but others include Zidis, Relprevv, Olzapin, Zalasta, Zolafren, Zypradhera, and Oferta.
 
For patients with congenital long QT syndrome (CLQTS), we recommend that, unless no other option is feasible, drugs on any of the QTdrugs lists should be avoided.  For this reason, bedaquiline and olanzapine will also be included on the list of Drugs to be Avoided by CLQTS Patients.

 

Click here to learn more


balloon catheter with flexible microchips attached
Tiny, flexible microchips shown 
on a balloon catheter
Flexible Microchips Could Change the Future for SADS Patients

What may sound a lot like science fiction, this technology is actual research happening in the United States right now!  The latest Consumer Electronics Show, this past January 8-11, 2013, featured many new kinds of technology. One specific area could have potential benefits for SADS patients.  
 
Engineers from MC 10, a private research and development group working on the interface between humans and electronic devices, has developed flexible microchips that can be used in a variety of ways.
 
In an article on Quartz.com, one researcher discusses their goals to, "eventually create an artificial pericardium-the sack that surrounds the heart-and infuse it with a mesh of flexible circuits, all firing in a precise and reactive way, to act like a much more sophisticated and precise pacemaker for a diseased heart."  Already, MC10 has created a prototype balloon catheter (pictured right) equipped with sensors that can measure electrical misfiring caused by cardiac arrhythmias.
 
While there is much more research to go in regards to this technology, it is still a promising treatment on the horizon for all SADS patients
 
Ryan Kegley
Raising Awareness in Virginia!

Ryan Kegley (left) of Fisherville, VA chose to do his 7th grade science fair project on Long QT Syndrome.  Ryan has LQTS type 1 along with his sister, Alli.  In addition to having a passion for science, Ryan also likes to play the drums, hunt, and fish.  According to mom, Joy Kegley, "He learned a lot about his condition while working on the project." Not to mention, he's spreading awareness in a creative way! Way to go, Ryan!

Did your child do a school project about SADS or SADS-related issues?  Send us the photo and short description and we'll feature it on the SADS Connect section of the SADS website.  These stories hep inspire other kids out there to help get the word out and create a great space to share ideas and other happenings

SADS 6th International Conference Available on DVD!

SADS DVD
The DVDs have finally arrived!  Visit the SADS store to order your copy before they sell out!

If you attended the 2012 International Conference in Salt Lake City, Utah, you will receive your complimentary copy of the DVD in the mail within the next two weeks.  Questions?  Contact Amy Dorsey or call 800-STOP-SAD.

SADS Foundation Courts K. Cleveland, Jr. Young Investigator Awards in Pediatric Cardiac Channelopathy  Research 
 
2012 Award Winners
To encourage the next generation of researchers in SADS conditions, the Sudden Arrhythmia Death Syndromes (SADS) Foundation is announcing the Sixth Annual SADS Foundation Courts K. Cleveland, Jr. Young Investigator Awards in Cardiac Channelopathy Research.  
 
As in past years, there will be a BASIC SCIENCE award and a TRANSLATIONAL/CLINICAL SCIENCE award given. Both awards will be administered by the Pediatric and Congenital EP Society (PACES), and will be presented at the annual PACES evening meeting, May 8th at the 2013 Heart Rhythm Society Scientific Sessions.
 
For an overview, criteria and award information click here.

The Deadline for Submission is April 8, 2013 and should be e-mailed as a single PDF file including the cover letter to the selection committee chair, Charles Berul, MD.
 
Save The Date!

SADS Foundation 7th International Conference

Columbus, Ohio
November 1-3, 2013

Details coming soon!
Families with Bob at the Mets!
Wondering Where Bob is this Season?

Have you been asking yourself "Where's Bob?"  The SADS Foundation knows!  Stay tuned to find out where you can meet the 'real' Bob, and his two new pals, Phil and Manny as they carry the warning signs of Long QT and other SADS conditions to major league baseball parks all around the nation!  
Thank You and Farewell
 
Me with my puppy, Nina, and Flat Bob!
Next Thursday, January 31st will be my last day as the Awareness and Volunteer Director at the SADS Foundation.  While working to finish my Master's in Public Health, I have chosen to pursue an opportunity in the private research sector.
 
Thank you, all of you, for sharing your amazing stories, talents and gifts with me and the SADS Foundation.  My experience here has been truly unforgettable and I am a much better person for having known and worked with all of you.  As I will always be an advocate for heart conditions, I hope to see you all again someday, in the meantime, take care. 
 
With Love,
 
Adrienne Butterwick
Upcoming Events:

CHOC SCA in Youth Conference - Jan 25-26 - Anaheim, CA

4th Annual Girls (and Guys) Night Out - Jan 31 - Winnetka, IL 

Annual Brian Price Memorial Jumpathon - Feb 14 - Dallas, TX

 

Have an event to submit?  Contact Monica or call 800-STOP-SAD