LIVE-LQTS Study Update

Thanks to you, 120 of the 594 enrollees in the LIVE-LQTS study are from the SADS Foundation, more than from any individual medical center! We want to have 2,000 participants, so don't wait - sign up today!



Comments from participants:



"This study is helping empower my kids to take control of their diagnosis"

"This study captures the biggest question in my life right now"

"I'm really just doing it to get the Fitbit"



Enrollment is simple --- a 15-20-minute phone call with a Coordinator for adults or parents of a child, and a follow up 30" phone interview for kids. The study is open to anyone ages 8-50 years old with a LQTS diagnosis, with any level of exercise or no exercise at all. There are no geographic limitations to participation. It's a three-year study, with a brief questionnaire every six months.



The goal is to determine how lifestyle and exercise affect the well-being of individuals with LQTS. This study is funded by the National Institutes of Health.



For more information, please call the LIVE- LQTS coordinating center at 866-207-9813, or email  live.lqts@yale.edu or www.livelqts.org.

Enrolling Research Studies

Watch this TED Talk from Keynote Speaker Dr. Craig Venter

The SADS Foundation is honored to host Dr. J. Craig Venter as our Keynote Speaker at the 9th Annual International SADS Foundation Conference CME Session - Putting it Together: From the Genome to the Phenotype. Below is one of Dr. Venter's TED Talks.



Craig Venter unveils
Craig Venter unveils "synthetic life"


To be able to hear Dr. Venter in person, join us in San Diego from Friday, September 30 to Sunday, October 2, 2016. Click here for more information.

Research: What It Means for You

at the 2016 Conference



Be sure to attend our conference on Friday September 30th to learn about -Research: What It Means for You
 
Highlights include our 10 a.m. Keynote Speaker, J. Craig Venter, one of the leading scientists of the 21st century for his numerous invaluable contributions to genomic research.
 
In the afternoon, we will have a special research session which will include talks on gene therapy, patient-centered outcomes research, the Health eHeart project and how you can get involved, and a discussion of exercise and SADS diseases-what we know, and where we hope to go with research.
 
Friday evening, you won't want to miss the "Take Steps to Stop SADS" 25th Anniversary Kick Off Event, with buses to transport attendees to Mission Bay Park for our sunset fundraising walk along Mission Bay.
 
Be sure to join us in San Diego!
Shared Decision-Making Allows Some Athletes with CPVT to Compete

soccer_kidspenality.jpg "Shared decision making supported by evidence-guided medical therapy and incremental interventions lays the foundation for a more permissive approach to not only allowing, but potentially encouraging participation in physical activity, including competitive sports," the authors said who include our very own Board President Dr. Michael Ackerman and Scientific Advisor Dr. Shubhayan Sanatani.



To read the full article, click here.
Genetic Counseling Student Requests Comments from You

Hello! My name is Kacie Baker and I am a second-year genetic counseling student at The University of South Carolina School of Medicine. In addition to my love for genetic counseling, my passion for cardiology goes back to June 1992 when I had open heart surgery at Boston Children's Hospital for several congenital heart defects. I am passionate about not only one day working in the field of cardiology, but also researching personally relevant areas of cardiac medicine. I am particularly interested in hereditary components and exercise recommendations for those with or at risk for heart disease. Specifically, I want to study how best to communicate exercise recommendations for those at risk for sudden cardiac death, how well those recommendations are understood, and personal motivations behind continuing or discontinuing an exercise practice. I am thrilled to have the opportunity to research an area of medicine that is important to me.  Thank you for taking the time to contribute your thoughts and ideas to my study. Together we can work towards personalized medicine in cardiology and education for both medical professionals and the general population!


Please email me at kacielbaker@gmail.com
Drugs to Avoid Update

The safe use of the CredibleMeds® lists of medications requires that the user have the most up-to-date lists and be aware when changes have been made.  Therefore, we wish to inform you of the following:

     
We have evaluated the evidence for Roxithromycin (brand names Rulide®, Xthrocin®, Roxl-150®, Roxo®, Surlid®, Rulide®, Biaxsig®, Roxar®, Roximycinv®, Roxomycin®, Rulid®, Tirabicin®  and  Coroxin®, an antibiotic marketed outside the US that is now on our Possible Risk List, and found  credible evidence of risk of Torsades de Pointes (TdP.  Therefore, we have moved it from the Possible Risk list to the Known Risk list.



We also evaluated the antipsychotic drugs flupentixol (Depixol® or Fluanxol®) and tiapride (Tiapridal®, Italprid® and several others) also marketed outside the US and found substantial evidence of QT prolongation but only limited evidence of TdP. Therefore, these drugs have been added to the list with Possible Risk of TdP.



Ranolazine (Ranexa® or Ranozex®), a drug approved for the treatment of angina in the US and several other countries, is known to prolong the QT interval and in 2006 was placed on the Possible Risk of TdP list.  We have found conclusive evidence that ranolazine is associated with reports of torsades de pointes (TdP) ventricular arrhythmia when given to patients with hypokalemia, hypomagnesemia or bradycardia or when taken with other drugs that prolong the QT or drugs that block its metabolic breakdown. For this reason, ranolazine has been moved from the Possible Risk list to the Conditional Risk of TdP list.



Also, because these four drugs cause QT prolongation, they will also be on the list of Drugs to Avoid (if at all possible) in patients with Congenital Long QT Syndrome.  However, it should be noted that, because of another of its pharmacologic actions, ranolazine is being evaluated as a possible treatment to prevent arrhythmias for one particular genetic subset of patients with the congenital Long QT syndrome.
June 2016 - In This Issue
New Conference Packages

Be looking for a separate e-mail to learn how to take advantage of our new conference packages. We look forward to seeing as many of you as possible on Friday, September 30 - Sunday October 2 in beautiful San Diego, California.!

Combo Package
Conference Registration and 3-Night Hotel Reservation
Save $50 if you register for the conference and reserve your hotel at the same time.  
 
Extended Stay Package
The SADS Foundation has arranged for our conference guests to be able to stay for Sunday and Monday nights at our conference rate of $139 depending on hotel availability.  
 
Payment Plan
You may pay for either package in monthly installments with the final payment required by September 15, 2016.

Knowledge or Misdiagnoses?

doctor.jpg
Make certain your healthcare professional knows how to care for you and your family to prevent misdiag- nosis as well as the wrong care and treatment of SADS conditions. Take a moment right now to DONATE to the Medical Education Program of the SADS Foundation - be a part of keeping hearts beating!

Announcing the Signature Event of the SADS Foundation

We will be kicking off our 25th Anniversary by hosting our first new signature event Take Steps to Stop SADS on Friday evening at our 9th Annual International SADS Foundation Conference, but any of our families can hold their own Take Steps to Stop SADS event in their local community during any time of year. More information will be coming soon!

AmazonSmile

AmazonSmile is a website operated by Amazon that lets customers enjoy the same wide selection of products, low prices, and convenient shopping features as on Amazon.com. The difference is that when customers shop on AmazonSmile (smile.amazon.com), the AmazonSmile Foundation will donate 0.5% of the price of eligible purchases to the charitable organizations selected by customers.



Remember, if you want Amazon to donate to The Sudden Arrhythmia Death Syndromes Foundation, you need to start each shopping session at the URL http://smile.amazon.com, and AmazonSmile will donate 0.5% of the price of your eligible purchases.



Events
July 16

Revive and Thrive - Young Hearts with ICDs

Salt Lake City, UT



July 25

Ryan Weidler Memorial Golf Tournament

Norristown, PA



September 7-13

NAME 2016 Annual Meeting

Minneapolis, MN



September 17

19th Annual Hanss Oktoberfest

Colorado Springs, CO



September 24

Christie's 11th Annual Heartoberfest

Saratoga Springs, NY



September 30

Take Steps to Stop SADS at 2016 Conference

San Diego, CA



October 21-22

HCMA Annual Meeting

Boston, MA

Get in Touch


1-801-272-3023


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SADS Foundation | 4527 South 2300 East, #104 | Salt Lake City | UT | 84117