SADS 20th Anniversary Logo

  July 2013

Updates Made to QTdrugs List



Added to "Possible risk of torsades de pointes":

  1. Pasireotide (Signifor�): is a new drug approved for the treatment of Cushing's Disease. The FDA recommends obtaining a baseline ECG before administering the drug
  2. Telavanir (brand name Vibativ�), an intravenous antibiotic
  3. Rilpivirine (Brand name Edurant�), also marketed in the combination products Complera� and Eviplera�, as oral antiviral therapy for patients with HIV/AIDS.
  4. Vorinostat (Zolinza�) for the treatment of cutaneous Tcell lymphoma

Added to "Risk of torsades de pointes".

  1. Ondansetron (Zofran� and others),
    a drug for the treatment or prevention of nausea and vomiting
  2. Dronedarone (Multaq�), a drug for the treatment of arrhythmias

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. is now CredibleMedsTM


Chance to Win a Quilt!
SADS Heartbeater

Patty Vannoy, an RN at Fairfield Medical Center, made and donated this beautiful quilt as a donation drawing prize.
Tickets are $2 each and the drawing will be at the SADS International Conference.
Nicole Bencie, age 16, applied for and won a 
spot (from the hundreds of kids who applied) in a summer program at Oxford University in  
England. Congratulations Nicole!
Click Here to Register Now!
SADS Safe Schools Month Begins Now!

 The 2013 Goal for SADS Safe Schools is that all children with a SADS Condition have an updated care plan in place with their school and that school nurses, teachers, coaches, etc. know what to do in an emergency


Our comprehensive Care Plans and our Back-to-School Checklist will ensure that you take all the steps necessary to protect your child at school. Make sure you complete your care plans now and talk with your school as soon as school starts again in the fall.


Order a SADS Safe Schools kit for care plans and awareness materials at 

SADS New Online Group
Looking to share your experiences with other people with SADS Conditions?


Check out our new Inspire Online group. This site gives our SADS members a place to discuss their SADS conditions openly with other family members. This functional and protected site is a great place to meet other people with your condition and to ask questions from people who have been through experiences similar to yours. Inspire prides themselves on protecting medical information and not selling any patient information (however, as with any online site, you should always protect your own medical information, and discuss it anonymously). Check out this site today!




Are You the Parent of a Child who Survived A Sudden Cardiac Arrest in the Past 3 years?

If so, I want to hear your story!


If you have experienced having a child who survived a sudden cardiac arrest within the past 3 years, you are invited to participate in a research study conducted by Dr. Vicki L. Zeigler, a nurse researcher at Texas Woman's University.


The purpose of the study is to explore the experiences of parents (thoughts, feelings, and meanings) of having a child who has survived a sudden cardiac arrest in order to learn how to help families through this difficult experience.


The study will consist of an online survey and a telephone interview at a time that is convenient to you and will take approximately 1-2 hours of your time. You will receive a $25 gift card for your completion of the interview, but you can withdraw from the study at any time.


Click here for more information. 

Lemonade Stand for LQTS

Hi, my name is Makenna Chiaventone and I'm 9 years old. My sister's name is Giana and she is 3 years old.


My mom was getting ready to have a garage sale and I asked her if Giana and I could have a Lemonade stand.  My sister Giana has Long QT Syndrome.  I told her that money that was made selling Lemonade would be donated to the SADS foundation.


Here is a picture of us selling Lemonade.  We were able to make $40.00. I hope this helps.Thanks for all you do to help kids like my sister and others with Long QT.


Makenna & Giana Chiaventone

Climb to Conquer SADS- 
Mt. St. Helens


This year, Dr. Chris Anderson and his stalwart team of mountaineers will be tackling Mt. St. Helens, , on September 15th.  Twelve enthusiastic volunteers have raised $1,000 each for the SADS Foundation in order to participate in this event.  Here's the challenge to SADS Families everywhere: participate virtually! Join this extraordinary effort by sponsoring this team. It is easy and fun to raise $1,000 and have your family's flag carried to the top of Mt. St. Helens. Contact or click here for more information about your family flag and tips to raise your $1,000!


NASN Was a Success!


The SADS Foundation exhibited at the National Association of School Nurses conference on June 27-28 in Orlando, Florida. Over 100 nurses signed the pledge to become SADS Nurse Champions!

And there was lots of interest in our new brochure for the Heart Safe Schools Accreditation program.

Community CPR Training in Fairfield County


The Snider Community Heart Watch, along with the Fairfield Medical Center Gordon B. Snider Cardiovascular Institute, sponsored free CPR  training on May 18th. Nearly 240 individuals are now trained to help in an emergency, creating a heart safe community.  


In addition, more than 40 individuals were trained in an abbreviated version of CPR called HOPE, which stands for Hands On Practical Experience. This technique focuses on quickly alerting EMS and starting chest compressions immediately.
"The more people we have trained in CPR, the safer people in Fairfield County are," said Bob Williams, RN, co-chair of the Snider Community Heart Watch.
The Snider Community Heart Watch is a task force of more than 30 volunteers, including physicians, nurses, community members and other FMC employees, who are dedicated to making Fairfield County a more cardiac-safe community.  The group is focused on teaching residents CPR and how to properly use an automated external defibrillator (AED).

Maryville College Student Completes Senior Thesis on Preventing Sudden Death in Young Athletes


Tayler Smith recently graduated from Maryville College in Tennessee where she completed her senior thesis in exercise science. Her thesis reviews in detail the screening procedures for competitive athletes and how screening procedures help prevent the incidence of sudden death in young athletes. Tayler majored in exercise science and minored in psychology and plans to attend physical therapy school. She has also found success as a member of the Maryville College basketball team. Tayler's sister passed away from ventricular arrhythmia in 2003 and now Tayler is working hard to help others with SADS conditions.

Welcome to the SADS Family, Jan!


I am honored to join the team at the SADS Foundation as the Director of Development and Marketing to further the mission of saving the lives and supporting the families of children and young adults who are genetically predisposed to sudden death due to heart rhythm abnormalities. I come to this position with a Bachelor of Arts in Public Relations from the University of Utah, a Bachelor of Science in Elementary Education from Utah State University, and 17 years of experience in development and leadership in the non-profit community. The loss of young adults or children touches my heart as I have experienced this type of loss personally in my family although from different medical reasons. The opportunity to increase the support of the families dealing with SADS inherited disorders and the physicians who work to treat and cure these disorders as well as the awareness of the public is a challenge I am thrilled to undertake.

 September 1
Colorado Springs, CO
Upcoming Events




September 15
Climb to Conquer SADS 2013
Mt. St. Helens, WA

September 21
Saratoga Springs, NY

November 1-3
7th International Conference
Columbus, OH


The SADS Foundation

Alice, Anne, Carol, Sylvie, Christine, Jan, Rachel, Sarah, and Brandon


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