Medical E-newsletter

Here's the latest news from the SADS Foundation!
The Role of Sympathetic Nervous System in the Long QT Syndrome: The Long Road from Pathophysiology to Therapy

In this article, author Dr. Peter Schwartz reviews the role of the sympathetic nervous system in long QT syndrome (LQTS), in light of clinical and personal experience. The evolution of concepts related to LQTS is examined after 40 years of research and treatment. Studies stimulated by the sympathetic imbalance hypothesis have generated many unsuspected novel data and have provided an extremely strong rationale for the therapeutic use of left cardiac sympathetic denervation to prevent ventricular fibrillation, not only in LQTS but also in other life-threatening diseases associated with high risk for arrhythmic sudden death.  This article can be found in Cardiac Electrophysiololgy Clinics, March 2012, Volume 4 , issue 1, pages 75-85.


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DNA Magnifier

Plasma Biomarkers for Prediction of Sudden Cardiac Death: Another Piece of the Risk Stratification Puzzle?


In this article, authors Rasmus Havmoller, MD, PhD and Sumeet S. Chugh, MD, discuss the role that plasma biomarkers may play in the prediction of SCD. They conclude there is a critical need for better methods to identify individuals in the general population who are at high risk of SCD. Future risk stratification models will rely on multiple predictors, and _1 plasma biomarker is likely to solve a piece of this puzzle. At present, some biomarkers have shown promise, but none of these are ready for clinical use. Future investigative approaches should use a uniform definition of SCD and perform evaluations in many subjects representing the general population, with analyses performed within and across the sexes, multiple ethnicities, and age groups. This article can be found in Circ Arrhythm Electrophysiol 2012;5;237-243..


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SADS Foundation's Courts K. Cleveland Jr. Young Investigator Awards - Submission Deadline: April 5, 2012

On May 9th, the Pediatric and Congenital Electrophysiology Society (PACES) will host their annual dinner, where the 5th Annual SADS Foundation Courts K. Cleveland Jr. Young Investigator Award in Cardiac Channelopathy Research will be awarded.  These awards will recognize two outstanding, original academic works in the field of cardiac channelopathies (BASIC SCIENCE category and TRANSLATIONAL/CLINICAL SCIENCE category), which has not been published prior to the 2011 Heart Rhythm Society annual meeting, and/or presented in the prior year by a junior investigator.  The deadline for submission is April 5, 2012 and submissions should be emailed as a single PDF file including a cover letter to the selection committee chair, Dr. Charles Berul.  More detailed information and specific criteria can be found on our website or email Christine Fontanella.


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SADS Foundation in Boston for the 2012 Heart Rhythm Society Annual Meeting and PACES Pre-Conference

The SADS team will join leading experts in the field of cardiac arrhythmias and SADS conditions in Boston this May at the 2012 Heart Rhythm Society Scientific Sessions.  The 33rd annual event will take place from May 9-12 and will showcase the latest science, discovery and innovation that are essential to quality care for patients. 

On May 8th, the SADS Foundation is partnering with PACES to sponsor a symposium, "Sudden Cardiac Death and the Rest of the Family".
Topics include: SCD: Scope of the Problem, State of the Art Molecular Autopsy, Autopsy Negative SCD, etc.


  For more information and to register...
Successful Medical and Community Education Programs in Ohio

On Friday, February 10th and Saturday, February 11th, the SADS Foundation traveled to Lancaster, Ohio for two programs with top notch support from our friends at the Fairfield Medical Center. The Fairfield Medical Center hosted Dr. Michael Ackerman at their facility on Friday for a CME program. On Saturday, we participated in a community event that we hope will be the first of many of its type. Over 100 community members including teachers, coaches, athletic directors, school nurses, parents, community members and more, joined together for a program entitled Sudden Cardiac Arrest in Youth: What Every Parent Should Know. Local physicians Dr. Gordon Snider and Dr. Douglas Pope joined Dr. Ackerman to lecture about SADS warning signs and what they can do as a bystander or a community member when these events occur.


Bob Williams and his team arranged for media coverage including a radio program, a local NBC interview and flyers and newsletter articles galore. The event coverage was incredible and through everyone's hard work, thousands were made aware of SADS conditions and important warning signs to prevent tragic events. We cannot thank Bob and his Fairfield Medical Center community enough for all that they did to make these events so successful. Special thanks also goes out to Boston Scientific for their support of these two Medical Education programs in Ohio. If you are a healthcare professional who is interested in working with us on a similar medical and community event with your hospital or facility, please contact Christine Fontanella.


New Study Now Enrolling Clinicians

Expert clinicians in treating persons with LQTS are needed for a research study examining physician's decision making regarding medical and behavioral treatment recommendations for LQTS patients. Participation requires a one hour phone, Skype, or in-person interview (if in the greater Philadelphia region). All participant's identifying information will be remain confidential. Interested participants should reply to or the LQTS Studies research office at the Philadelphia College of Osteopathic Medicine (PCOM) at 215-871-6464.

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Recent Medical Education Programs

SADS Sponsors Medical Education in Cleveland, OH

Last month, the SADS Foundation sponsored medical education seminars in the Cleveland area. Dr. Michael Ackerman spoke to local physicians and healthcare providers about both channelopathies and cardiomyopathies and we were impressed with the questions that came from each group.  Thank you to Transgenomic, Inc. for providing the SADS Foundation with an unrestricted educational grant which made these programs possible.

SADS Sponsors Medical Education in West Palm Beach and Miami, FL

The SADS Foundation participated in the Children's Hospital of Philadelphia (CHOP) annual conference in Orlando, FL in February.  Dr. Michael Ackerman also gave lectures in West Palm Beach and Miami, FL.  Dr. Jorge McCormack, Dr. Grace Wolff, Dr. Patricia Sherron and Dr. Steven Lipshultz were instrumental in the planning process and we would like to thank them for their time and efforts.   We would also like to thank Boston Scientific and GeneDx for their unrestricted educational grants which made these programs possible.

SADS Conditions Highlighted at Philadelphia District School Nurse Meeting


A special thank you to Jackie Henderson, RN and Karen Smoots, RN from the Children's Hospital of Philadelphia for taking the time to speak for a second time on the SADS Foundation's behalf about conditions leading to SCD in the young at a local school nurse program in Philadelphia, PA. Jackie and Karen discussed the symptoms of SADS conditions, how they are diagnosed and treated and how school nurses can apply this information to their practices. The SADS Foundation provides resources to school nurses, including care plans and pre-participation sports screening questionnaires. For more information on school nurse resources, please visit our website.  


Please contact Christine Fontanella or call 800-STOP-SAD if you are interested in working with us to bring medical education to your hospital or facility.

Two Interesting Radio Programs

On January 7, 2012, the Mayo Clinic's Medical Edge Weekend program featured Dr. Michael Ackerman. The program focused on sudden cardiac death in the young, and featured call-in questions from SADS members.  It was pointed out that Long QTS affects approximately 1:2000 individuals and is more common than all childhood cancers combined.  We encourage you to log onto the Medical Edge website and listen to the informative interview.  We would like to thank the Mayo Clinic and Dr. Ackerman for their tireless efforts towards raising awareness for SADS conditions and participating in educational programs like this one.

Personalized Genetic Testing
On February 16th, Ohio State University Genetic Counselor Amy Sturm participated in a radio program entitled Personalized Genetics Testing: Medical and Ethical Issues.  This program discussed a new study done by genetics experts at the Ohio State University revealing the challenges and limitations of direct-to-consumer, personalized genetic testing.   Though the majority of this program is about DTC testing, we would like to thank Amy for also discussing SCD genetics, HCM and inherited arrhythmias as well as the landscape of genetic testing access for these diseases.  Visit the SADS website to listen to the podcast.


NEW! Heart of the Matter - Ask the Experts

We're proud to introduce a new feature to you and your patients a new Q & A forum,  "Heart of the Matter - Ask the Experts". We hear from patients with unique questions on a daily basis and many times our trained staff is able to answer those questions. However, sometimes we refer to our medical advisory board for answers. With the help of our popular facebook group, LQTS Kids & Families, we've decided to create a space for these questions and their answers on our website in order to facilitate more thorough resources for our patients and families as well as providers. We invite you to take a look at the first question, answered by Dr. Mike Ackerman and filmed by Dan Alatorre, who moderates the LQTS Kids & Families facebook group. Questions can be submitted via the SADS website and will be answered monthly.

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Upcoming Events:

American College of Cardiology: March 24-27, 2012
Connor Senn Symposium on SCD in Athletes: May 8, 2012
PACES Pre-HRS Symposium: May 8, 2012
Heart Rhythm Society Annual Conference: May 9-12, 2012
National EMS Week: May 20 - 26 , 2012
CPR/AED Week: June 1-7, 2012