SADS 20th Anniversary Logo







July 2015


July 2015: In This Issue:
Support Medical Education!
 
It costs $300,000 yearly to educate doctors, school nurses, and health professionals so that they may capably treat your family. Please take a moment to consider what these services mean to you and then DONATE a portion of this amount - ensure that those who care for you know how to care for you!

In the first six months of 2015 the following has been accomplished... 
  • SADS Foundation Speakers Bureau
    We conducted a training session at the launch of the SADS Foundation Speakers Bureau before the Heart Rhythm Society's (HRS) Scientific Sessions during May in Boston. This means that family practitioners, pediatricians, ER physicians, and school nurses in your community will learn about the SADS warning signs and the necessary steps needed to ensure the best care for patients as experts share the PowerPoint presentation developed by our Medical Education committee. The launch was a huge hit with future speakers filling the seats!
     
  • 8th Annual International SADS Foundation Scientific Symposium
    Partnering with the NYU Langone Medical Center, we jointly provided the symposium "Sudden Arrhythmic Death Syndromes: Recent Advances and their Roles in Improving Outcomes" on May 29 in New York. The day included 15 leading experts covering the latest research on and treatment of Long QT Syndrome, CPVT, Brugada Syndrome, and ARVC. The seminar was packed with more than 125 attendees who were highly engaged to the end discussing the material presented. This was our most educational and well-attended symposium so far!
     
  • Heart Rhythm Society (HRS) Seminar
    We hosted a second scientific session with our scientific advisors about their challenging cases of SADS conditions as part of HRS. More than 110 people attended to learn about the complexities of treating SADS families - a key event for SADS and the Foundation.
     
  • Seminars
    So far this year, our scientific advisors have presented more than 10 SADS seminars for electrophysiologists across the U.S.
     
  • Quarterly Lit Review
    And finally, the SADS Foundation quarterly reviews and distributes 400 to 500 scientific articles about the latest in SADS conditions for use by nearly 6,500 physicians, fellows, and families.
Please contact Jan at 801-531-0937 or jan@sads.org for more information.
Advocacy in Action: Your Voice Matters!
 
In the past few months, we've asked you to take a number of actions in support of legislation that is important to the SADS Foundation and its constituents. The response has been overwhelming and humbling; we sincerely appreciate everything you do, from sending emails and signing petitions to picking up the phone and calling your Congressperson.  Most recently we sent out an advocacy alert about the 21st Century Cures Act, asking you to support the Act but not the Brat amendment, which would have put NIH funding in serious jeopardy. In less than 24 hours, 245 organizations (SADS Foundation included) rallied to defeat the amendment; the Brat amendment was defeated by a 2:1 margin and the House voted overwhelmingly to pass the Cures Act last Friday. Thank you again for being some of the many "voices" of the SADS Foundation!
Most Recent Changes 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 Lists:

"We have evaluated the available evidence for the cancer drug, ceritinib (Zykadia ® ), and found substantial evidence that it prolongs the QT interval in some patients during routine use.  We did not find convincing evidence of torsades de pointes ventricular arrhthmias associated with the drug at this time.  Therefore, we have added ceritinib to the list of drugs with Possible Risk of TdP and also to the list of Drugs to Avoid for patients with congenital long QT syndrome, if feasible.  Since this drug is used to treat cancer, avoiding its use may not be possible and therefore we recommend careful monitoring of the QT interval if it is given to these patients."

For more information on the reasoning and rationale for the changes, please click HERE.
The SADS Foundation Responds to 2015 IOM Report

The Sudden Arrhythmia Death Syndromes (SADS) Foundation supports the eight recommendations proposed in the 2015 Institute of Medicine Report - Strategies to Improve Cardiac Arrest Survival: A Time to Act.

Please visit http://www.stopsads.org/ to access the full article and supporting views and actions of the SADS Foundation.

Recommendation 1:  Establish a National Cardiac Arrest Registry

Recommendation 2:  Foster a Culture of Action Through Public Awareness and Training

Recommendation 3:  Enhance the Capabilities and Performance of Emergency Medical Services (EMS) Systems

Recommendation 4:  Set National Accreditation Standards Related to Cardiac Arrest for Hospitals and Health Care Systems

Recommendation 5:  Adopt Continuous Quality Improvement Programs

Recommendation 6:  Accelerate Research on Pathophysiology, New Therapies, and Translation of Science for Cardiac Arrest

Recommendation 7:  Accelerate Research on the Evaluation and Adoption of Cardiac Arrest Therapies

Recommendation 8:  Create a National Cardiac Arrest Collaborative

We invite you to share your ideas and comments on this important report through e-mailing alice@sads.org or matt@sads.org or calling us at 801-531-0937.
 
504 Plans versus IEPs: Which one is right for you?

 

As parents start thinking about the end of the summer and the launch of a new school year, we start getting a lot of phone calls and messages about whether or not their children can utilize Individualized Education Plans (or IEPs) and/or 504 Plans. IEPs and 504 plans establish "blueprints" that assist children with unique needs in their learning environment in very similar ways. However, each type of plan stems from a different legal origin and has slightly different requirements and processes. In both cases, these types of plans are designed to accommodate kids in their schools to ensure that they have the same opportunities to learn that their peers do. Because these types of plans are more similar than different, it can sometimes be difficult to determine which (if either) of these options is right for your child. Last year the SADS Foundation was alerted to an online resource that shows the similarities and differences between these types of plans in an easy-to-read table format. Click here to see how IEPs and 504 plans compare, and to find additional links to resources that can guide you in seeing what your options are.
Sports Participation in Genotype Positive Children With Long QT Syndrome   

Peter F. Aziz, MD; Tammy Sweeten, MS; Ramon L. Vogel, MD; William J. Bonney, MD;
Jacqueline Henderson, RN; Akash R. Patel, MD; Maully J. Shah, MBBS

JACCCEP. 2015;1(1):62-70. doi:10.1016/j.jacep.2015.03.006

SADS Medical Education Committee Member Peter Aziz, MD of the Cleveland Clinic recently published research on LQTS and sports. Participation in both competitive and recreational sports may be safer than previously thought for pediatric patients with congenital long QT syndrome (LQTS).

In an accompanying editorial, Michael J. Ackerman, MD, PhD, FACC, professor of medicine, pediatrics and pharmacology and director of the Long QT Syndrome Clinic at Mayo Clinic in Rochester, MN, said decisions to play sports should be determined by a LQTS expert in conjunction with the athlete and his or her family so that they can make a well-informed decision knowing all the risks. 

Find links to the articles in this news release from the American College of Cardiology.
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 (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. If you have not done so already, please take a moment to answer this short survey.

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.

Sincerely, 

The SADS Foundation

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