SADS 20th Anniversary Logo

June 2014

June, 2014 - In This Issue:
Best-selling author and friend of SADS to donate proceeds of new book!
Author and advocate Dan Alatorre has been a great friend to The SADS Foundation for many years. Dan's current book, The Long Cutie, is on its way to being #1 on the best sellers list on, and you can help reach this goal! The Long Cutie showcases stories from families with Long QT Syndrome, and has now been published electronically.

Dan is generously donating all profits made from the e-book sales to the SADS Foundation through the end of June 2014!

"The Long Cutie" e-book has been reduced to ninety-nine cents, so pick up a copy today!

To learn more about Dan and his collections of stories, please see his site here. We are truly grateful for Dan's generosity, and we hope that many of you will find his stories as heartwarming and life-affirming as we do.  

SADS Safe Schools - Call to Action
Parents, now is the time to start preparing to ensure your child is safe for the 2014-2015 school year! Make sure your child has an updated care plan in place and know who is responsible for it. Talk to all teachers and staff who will have any interaction with your child to verify they know about your child's condition and how to monitor it. This includes their homeroom teacher, P.E. teachers, recess monitors, lunch room monitors, bus drivers, school secretaries, principals, coaches, etc. Verify there is an AED in the building and that all staff interacting with your child knows the location and how to use it. Check out the SADS Safe Schools website for more information on how to keep your child safe at school or email Jenny at  

The 8th International SADS Foundation Conference
While it may seem a long ways away, the SADS Foundation is already busy planning for its 8th International Conference on Preventing Sudden Cardiac Death in the Young.

The conference will be held May 29-31, 2015, in New York. Once more, we will hold Continuing Medical Education (CME) sessions on May 29th at the Langone Medical Center - New York University in New York City as well as Family and Patient Sessions on May 30th and 31st at the Islandia Marriott on Long Island.

Health experts will discuss the complexities of channelopathies, cardiomyopathies and the genetics underlying sudden, unexplained death in children and young adults with members of the medical community.

Families will be provided many opportunities including:
  • Learning about the latest genetic testing and treatment-by-genotype research
  • Learning about advances in the diagnosis and treatment of SADS conditions. 
  • Networking to build relationships and expand their knowledge base with others
  • Participating in a "Kids Track" where children and young adults will have their questions answered, learn about sports and exercise guidelines, and network with other children living and thriving with SADS. 
We are excited as we make preparations and look forward to seeing you there!     
SADS Connect Parent Task Force
The SADS Foundation is in the process of making changes to its SADS Connect program to ensure the many needs of children, youth, and their families are met. The Task Force will help us to determine which areas of interest should be developed or highlighted, how to network with other SADS families, and what types of new programs will be beneficial. If you are interested in joining the Task Force, please email for additional information.

Heart Rhythm Society 2014 Recap
The SADS Foundation attended the 35th Annual Scientific Sessions, May 7-10 in San Francisco, CA. As always, the meeting was jam packed with great educational lectures and an opportunity for us to meet with partners to discuss upcoming projects and plans.  

For the first time ever, the SADS Foundation was highlighted with a scientific session of our own entitled Collaborative Management of Complex Genetic Issues in Pediatric Patients - The SADS Experience. The session was chaired by Dr. Michael Ackerman and speakers included Peter Schwartz, MD, Charles Antzelevitch, PhD, Arthur Wilde, MD, and Elizabeth Stephenson, MD. The session focused on difficult cases that physicians submit to the SADS Foundation to share with our world-renowned scientific advisors to allow discussion between experts to improve patient management and care! What a great resource available to our physician community and how wonderful to be recognized at this high-level conference.  

We also awarded our Cleveland K. Courts Young Investigator Awards in both Basic and Translational Science during the PACES annual dinner meeting and hosted functions for the PACES Allied Health Professionals and the National Society of Genetic Counselors Cardiac Special Interest Group. We had many successful meetings with our corporate sponsors and even managed to fit in a local SADS Medical Education dinner program while we were in town. Lots of great things and many great ideas to follow up on in the remainder of year!
Health Insurance and SADS Conditions
The SADS Foundation was recently contacted by a family that had been denied insurance coverage for an AED that had been prescribed for her daughter, who has Long QT Syndrome. Having unsuccessfully appealed the decision, she reached out to us for advice and support.

After reviewing the correspondence between the patient family, the physician, and the insurance company, we were able to determine that there had been a coding error in the application. The physician had requested a portable AED; the responses from the insurance company were denials for a wearable AED. With the AED properly coded, the insurance company approved the request and the family now has an AED to keep their daughter safe.

This is just one recent example of how patient families are empowered to challenge unwarranted denials of coverage. If you do receive a denial, APPEAL! Go to our website for advice and support on the appeal process here, or contact Matt at

HRSA Bill Passed the Senate, Help it Pass the House!

Senator Harkin's Health Appropriations subcommittee approved the Health Resources and Services Administration's (HRSA) Rural and Community Access to Emergency Devices Program bill on June 10th; it passed the full Senate on June 12th. The bill is designed to save the lives of those who suffer from cardiac arrest and contains a $2 million increase for 2015, which is a 60% increase from previous years. However, this is only the first step in getting the bill passed. Next, the House of Representatives must approve it and then send it to the President for his signature. Please consider writing your Representative today to tell them to support this bill.  Click here to find your representative.

If you have any questions or need a template of what to write to your representative, email Jenny at or call 1-800-STOP-SAD.

1st Annual Heart Safe School Champion Award Winner  

Congratulations to Robert Walker from Pickerington, Ohio, on winning the 1st Annual Heart Safe School Champion Award! Robert was key to starting the Heart Safe School Accreditation program in Ohio. Not only did he help inaugurate the program as the superintendent of Lancaster City School District but he also led Pickerington School District in becoming the first school district in the nation to become completely Heart Safe! Robert has helped schools become safer and better prepared for individuals with heart conditions. Congratulations Robert, and thank you for all your hard work and dedication to the Heart Safe School Accreditation Program!

SADS Families Help With Research Again

graphic-chart-people.jpg Thanks to all of you who participated in the ER Study that Stephanie Felgoise, PhD., ABPP at the Philadelphia College of Osteopathic Medicine led. Her team is finishing up data collection in the next few months and we'll let you know the results as soon as she can share them. For more information, and to learn about future research you can visit:

Planned Giving   

elderly-laptop-couple.jpg Given the opportunity, who wouldn't want to write his or her own life story? To immortalize the values you have come to adopt?  To demonstrate your love for your family? To care for them in every way imaginable?  

You can. Not by writing a novel, but by writing your very personal will.

If you view your will as one last act of love in your life's story, a will takes on a very different hue. Unique as your life, your will not only passes property to individuals you choose, but it also can provide specific directions to address particular circumstances in your life (single, married, children with unique needs, grandchildren, charitable bequests). You can use your will to accommodate your special situations and form a valuable estate planning foundation.

Consult an experienced estate planning attorney to ensure that your will cares for the needs of your family and interests. If you are considering including the SADS Foundation in your will or estate plans, please contact Jan at or 801-531-0937 with any questions you may have.
New MPH Internship Program at the SADS Foundation


In partnership with the University of Utah's Division of Public Health, the SADS Foundation has launched a Family Support internship program for advanced level master's students studying public health. The internship helps the SADS Foundation with responding to family support questions, materials and requests. Public health students have the opportunity to learn more about SADS conditions, what it's like to work at a small non-profit organization, and about the work that we do in supporting families with SADS conditions.

Our very first intern, Tyson Goodrich, started in May of this past year, and he's been doing an incredible job working with the Family Support team. He will be finishing his Master's in Public Health this summer and will then be headed towards a career in Healthcare Administration through the Navy, starting in October at the Naval Hospital in Guam. We look forward to working with him and other outstanding and qualified individuals.

Educating Physicians About SADS - It's Important



Have you ever had a doctor prescribe a medication on the "Drugs to Avoid List" even after knowing your condition?  

Have you ever gone to a cardiologist who looks at your EKG and says there is nothing wrong, only for you to later have an episode?

Then you know how important it is to have the SADS Foundation working to make sure this no longer happens. Since 1992, the SADS Foundation has reached out to educate your physicians so that they better understand and treat SADS conditions.

Click here to give today!

Donor Recognition Wall



The SADS Foundation would like to extend our most genuine appreciation for the support from all of the families, friends, medical professionals, foundations, and corporations whose contributions help us fulfill our mission of supporting families and saving the lives of children or young adults with SADS conditions.

We would like to give special recognition to our cornerstone partners: Familion, Medtronic,  

St. Jude Medical, Boston Scientific, and Gilead. Each of these partners makes a large contribution of funding and resources to the SADS Foundation as we all work together to contribute to better health care for our SADS families.

To find out which additional Corporations and Foundations partner with us, please visit our website page at

To find out about our Legacy Circle Members and our Fabulous Fundraising Friends, please visit our webpage at

Additionally, if your name has been inadvertently omitted, please contact Jan at 801-531-0937 or 


Keister Music Night  
July 31, 2014
Lansing, IL

Heart to Heart Conference at the Royal College of

October 18, 2014 
Cavendish Square, London



The SADS Foundation

Alice, Christine, Matt, Jan, Jenny, Sarah, Grace, David, Tyson, Rachel and Brandon