SADS 20th Anniversary Logo

  December 2013

December, 2013 - Some Things In This Issue:

PCORI Awards $93.5 Million to Develop National Network to Support More Efficient Patient-Centered Research


The SADS Foundation is part of a Patient-Powered Research Network called "The Health eHeart Alliance: A Patient-Powered Research Network Focused on Cardiovascular Health" which received an award from PCORI. We are one of the organizations that will help to guide research topics, advocate for families with SADS conditions, and enroll patients for the new Health eHeart Network. The SADS Foundation's SIRCh Patient Registry is also a patient-centered database and will be a valuable resource to be utilized within the Health eHeart Alliance. Families with SADS conditions will benefit significantly from the collaboration between PCORI, Health eHeart Alliance and the SADS Foundation.


For more information click here.

SADS Foundation Courts K. Cleveland Jr. Young Investigator Awards in Cardiac Channelopathy Research 


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, Wednesday, May 7th at the 2014 Heart Rhythm Society Scientific Sessions in San Francisco.


The deadline for submission is March 21, 2014. Click here for additional details including rules, selection criteria and award information.

Updates Made to QTdrugs List 



  Added to Drugs to Avoid:

  • Apomorphine (Apokyn�, Ixense�, Spontane�, Uprima�), an injectable dopamine agonist for Parkinson's disease - added to list of drugs with Possible Risk of TdP.

  • Arformoterol (Brovana�) an inhaled bronchodilator for chronic obstructive lung disease- added to the list of drugs to be avoided, if at all possible, by patients with congenital long QT.

  • Formoterol (Foradil� and many others including combination products such as Symbicort�), an inhaled bronchodilator for asthma - added to the list of drugs to be avoided, if at all possible, by patients with congenital long QT.

  • Mifepristone (Korlym� and Mifeprex�), an oral progesterone antagonist for termination of pregnancy - added to list of drugs with Possible Risk of TdP.
  • Mirabegron (Myrbetriq�), an oral beta3 adrenergic agonist for overactive bladder - added to the list of drugs with Possible Risk of TdP.
  • Sulpiride (not marketed in US) (Dogmatil� and others), an oral anti-psychotic for schizophrenia - added to the list of drugs with Known Risk of TdP.
  • Telaprevir (Incivek� and Incivo�), an oral anti-viral for hepatitis C - added to the list of drugs with Conditional Risk of TdP because it blocks the metabolism of many drugs that prolong the QT interval.
  • Tetrabenazine (Nitoman�, Xenazine�), an oral monoamine transporter inhibitor marketed in the US as an orphan drug for chorea in Huntington's disease and around the world for other illnesses - added to the list of drugs with Possible Risk of TdP. 

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. To review a full list please see SADS Drugs to Avoid. is now CredibleMedsTM


*Warning: we've recently become aware of an app for QT Drugs that is NOT current and so not useful for LQTS. You should be very careful when looking at lists of QT-prolonging drugs. We only use the Credible Meds list as it is the most accurate and up-to-date.

Help SADS Win a Grant From Conquest Graphics


Help the SADS Foundation receive a grant from Conquest Graphics by clicking here and clicking the "like" button on the webpage! It takes less than a minute and could help us earn money to print our materials and resources! The contest ends on January 1, so please help us maintain our momentum and ranking so we can receive a grant.

This family-owned and operated company is giving away $20,000 in print donations to multiple nonprofits across the country! 

Some Philips AEDs Recalled




Certain HeartStart AED's (HeartStart FRx, HeartStart HS1 Home, and HeartStart HS1 OnSite) made by Philips Medical Systems, may be unable to deliver needed defibrillator shock in a cardiac emergency situation, the U.S. Food and Drug Administration said. These devices were previously recalled but the FDA wanted to let everyone know that you should keep them in use until you have a new AED to replace the defective one.


For more information click here. Click here to contact Philips Healthcare.

Send Us Your Story and We Might Feature it in Our E-newsletter!


The SADS Foundation is going to feature families and their stories each month of 2014 in our E-Newsletter. We are asking you to send us your story and photos to be included for the upcoming year. The staff members and volunteers at the SADS Foundation thank all of you for allowing us to serve you through our support, awareness, education, and advocacy programs. Please contact Jan Murphy at 801-531-0937 or to share your story as we all live and thrive together. Happy New Year!

Discounted Merchandise at the SADS Store!


Happy Holidays from the SADS Foundation! Make your holiday season complete with a purchase from our SADS Foundation Store, now featuring discounted prices on some of our merchandise. Cross off that hard-to-shop-for person on your list with a gift from SADS. Click here to visit the SADS Store.


Work Underway to Set 2015 AHA, CPR & ECC Guidelines


Five years ago we asked ILCOR Committee Members to add the warning signs of SADS conditions to the CPR Training Guidelines. As they prepare to convene again in 2015, stay tuned in 2014 for further information from us, including advocacy and action alerts with how you can get involved.

Brittany's Trees


It's very special to see newly-participating neighborhoods kick off the meaningful holiday tradition of Brittany's Trees. Each year, the number of trees sold tops the year before. And... 2013 succeeded in reaching the new goal of 1,500 trees. The commitment of the dedicated volunteers since 2005 when only 22 trees were shining in yards is incredible. Thanks go to Tony Valene, Jim Guthrie and the entire team for this event and the support it provides to the SADS Foundation to support families and save lives. Please contact Jan Murphy at or 801-531-0937, should you want to find out more about starting a Brittany's Trees in your hometown.Click here to watch the fun everyone in Carol Stream, Illinois had this year.

Goodbye, Sylvie Batchelor!


SADS Family, 

I will be leaving my position here at the SADS Foundation the first week of January. It has been a great year and I have loved being a part of such a great organization with overwhelming support. I have learned so much during my time here and will bring this knowledge with me to my future position. While I will miss being the coordinator for social media, I have received an opportunity to intern with Senator Patricia Jones at the Utah State Legislature.


I have truly enjoyed getting to know each of you over the year and wish everyone the best of luck and happy holidays!

Upcoming Events
January 25, 2014
Connecting Day Event
Stanford, CA


The SADS Foundation

Alice, Carol, Sylvie, Christine, Jan, Rachel, Sarah, Grace, David and Brandon


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