SADS 20th Anniversary Logo

April 2015

April 2015: In This Issue:
Calling all volunteers in the Boston Area 
The SADS Foundation will be exhibiting at the Heart Rhythm Society Scientific Sessions conference in Boston, MA and we would welcome anyone who would like to come to volunteer and help us. As a SADS volunteer you will be given an exhibitor badge which will allow you free access to the convention floor. This is a great way to see new products and talk to personnel from the industry. This is also a great opportunity to meet with the SADS staff and staff from other nonprofit partners like Parent HeartWatch and HCMA.

The following are the times and dates we will be exhibiting:

Wednesday, May 13th - 4:30pm - 7:30pm
Thursday, May 14th - 9:30am - 5pm
Friday, May 15th - 9:30am - 5pm

You can sign up for as little or as long as you'd like during any of those time-frames. If you are interested please contact Matt at 801.531.0937 or We look forward to seeing some of you there!
SADS 8th International Conference Family Sessions

There are only 6 weeks left until the SADS 8th International Conference Family Sessions. Make sure to register today by clicking the button below.

If you are planning on booking a room at the Islandia Marriott in Long Island for the conference, make sure to reserve your room today! The special rates are only good until May 4, 2015!

For a draft agenda of the Family Conference, click here (kids sessions agenda here). We look forward to seeing you!

Survey on AEDs  
and Insurance Coverage

The SADS Foundation has been contacted many times in the past by families who have had trouble obtaining insurance coverage for an automatic external defibrillator (or AED) for a family member or child with Long QT Syndrome and/or other SADS conditions. This survey will help us determine how widespread a problem this is for our families in our ongoing efforts to advocate for coverage of these life-saving devices. Please  click HERE to fill out the following survey if you or a member of your family has been prescribed an AED, but denied insurance coverage.
Relationship Satisfaction and Family Coping Study


Mothers of school-aged (Kindergarten and above) children with Long QT Syndrome (LQTS) are needed to participate in a study about relationship satisfaction and family coping. You can help our research partners learn more about LQTS if you:


  • Live with your school-aged child under the age of 18 who has LQTS
  • Are in an adult, committed/partnered relationship
  • Have 30 minutes to complete online questionnaires about thoughts, feelings and behaviors relating to relationship satisfaction and family functioning
  • Can read and write in English
  • Live in the United States

Study participation is anonymous. After completing the questionnaires participants will be given the opportunity to be placed in a random drawing with a 1 in 10 chance to win a gift certificate to Walmart or Target. Click HERE for more information.

Congrats to Genevie Echols  

Genevie Echols was diagnosed with Long QT Syndrome when she was 15 years old. "At that time I decided I could either live in fear from this diagnosis or I could empower myself and learn more about it. I chose to empower myself," says Genevie. She began learning about LQTS and realized how interesting it is. Through her studies she also developed a great interest in cardiology in general. Genevie decided to work toward getting her bachelors degree in biology, so she could fulfill the requirements to apply to medical school and become an electrophysiologist.


In the middle of Genevie's sophomore year, she had some unexpected trials come up. Her youngest daughter was diagnosed with two different types of LQTS and had to have a pacemaker implanted during midterms. Two months later, Genevie had to have an ICD implanted because of breakthrough arrhythmias even though she was on betablockers.


These trials, along with some additional health trials, put an end to her dreams of becoming an electrophysiologist. However, Genevie knew she didn't want to give up on her education. "I knew I still wanted to finish school and do something in the cardiology field. I had the opportunity to move to Minnesota and while looking for opportunities to finish school here I found out the Mayo Clinic has a Cardiovascular Invasive Specialist Program, says Genevie, "I applied and was accepted! I am extremely excited to begin my new adventure and to learn even more about cardiology!"


Genevie is a firm believer that a SADS diagnosis should not put an end to your dreams! They may have to be modified a little bit but they are not impossible. All of us at the SADS Foundation send her our congratulations and best wishes for her success. 


To learn more about the program, please click here.


The New SADS Foundation Speakers Bureau

To significantly leverage our growing ranks of committed local SADS experts, the Medical Education program is formally establishing a SADS Foundation Speakers Bureau designed to further the Foundation's reach through education and training of front-line health professionals by our expert physicians.

The Speakers Bureau inaugural training session will be hosted by Michael Ackerman, MD/PhD in Boston at the upcoming Heart Rhythm Society Scientific Sessions in May 2015. Upon completion of the training session by Dr. Ackerman, these newly-informed SADS advocates will then commit to speaking in their local region to target groups including Emergency Physicians, Pediatricians, Family Physicians (and their professional staff members), and School Nurses.

With support from the SADS Foundation and our volunteers, these newly-trained SADS experts will aggressively seek opportunities to present this life-saving information across the United States so that we may increase the number of young lives saved from a preventable death. For more information, email
Additions to Drugs to Avoid List

Based on an analysis of emerging evidence, the following changes have been made by the webmasters of the Drugs To Avoid List:

  • Donepezil (Aricept?) has been associated with Torsades de Pointes (TdP); it has been added to the list of drugs with Known Risk of TdP.
  • Cilostazol (Pletal?) has been added to the list of drugs with Known Risk of TdP.
  • Torsemide (Demadex? and other brands) can prolong QT by causing low serum magnesium and/or low serum potassium - both conditions associated with TdP; it has been added to the list of drugs with Conditional Risk of TdP.
  • Atomoxetine (Strattera?) has the ability to prolong QT interval. As such it has been added to the list of drugs with Possible Risk of TdP.
  • Ciprofloxacin (Cipro? and other brands) and Fluconazole (Diflucan? and other brands) have both been moved from the Conditional Risk List to the list of drugs with Known Risk of TdP.
  • Propofol (Diprivan?, Propoven? and other brands) has been added to the list of drugs with Known Risk of TdP.

All of the aforementioned medications are also on the Drugs to Avoid List for patients with congenital Long QT Syndrome.


Fosphenytoin (Cerebyx?, Prodilantin?) was placed on the list of drugs with Possible Risk of TdP when CredibleMeds' QTdrugs list was launched in 2000. However, there was only minimal evidence of QT prolongation and since then no credible evidence of QT prolongation and/or TdP has been subsequently found. Therefore, they have removed fosphenytoin from the Possible Risk List and from the list of Drugs to Avoid for patients with congenital Long QT Syndrome (LQTS).   



San Francisco Comprehensive Genetics Program -
Family Seminar

The University of California at San Francisco is hosting a one-day educational seminar on topics of interest to patients living with inherited heart rhythm disorders or cardiomyopathies and their families. The afternoon's events will include lectures as well as question & answer sessions on eight key topics, including small group breakout discussions over lunch and an open-mic discussion with a panel of experts. We here at the SADS Foundation are delighted to have been invited to participate by hosting one of the eight key topics (Social and Emotional Support specifically). In partnership with UCSF, we hope you will take advantage of this opportunity to become better informed, to network with new families, and to direct your questions to the expert panel. Family physicians, school nurses, and coaches are all welcome to attend as well.

There is no charge for this event. Please call 415.476.5409 to speak with Joan directly to reserve your spot and free box lunch.

Additional information about the one-day seminar can be found by clicking HERE. You can also contact Matt at or 801.531.0937.
21st Annual No Ball at All
The SADS Foundation and No Ball at All Committee Members would like to ask you to donate to this year's campaign and add your contribution to those that already have been given! The gifts of all of our supporters are genuinely appreciated and make it possible for the SADS Foundation to do the following and so much more!

SADS Foundation Speakers Bureau - teaching frontline medical professionals the warning signs of SADS conditions.
Heart Safe School Accreditation - making schools safe for our children throughout the United States.
8th Annual International SADS Foundation Conference - partnering with NYU Langone Medical Center to bring medical professionals and families together to learn about the most current research and treatment of SADS conditions on May 29-31 in New York.

Contribute today! Please contact Jan at 801-531-0937 or, should you want to become a committee member or would like further information.

We send our THANKS to all of our SADS families!!

Heart Rhythm Society Scientific Sessions 
May 13-16th, 2015 
Boston, MA


Brian Anderson 5K
May 10, 2015 
Sewell, NJ 
SADS 8th Annual  
International Conference 
May 29th - 31st , 2015 
Long Island, NY 


The SADS Foundation

Alice, Matt, Jan, Grace, Amanda and Brandon.