SADS 20th Anniversary Logo

March 2014

March, 2014 - Some Things In This Issue:
No Ball At All - Blake and Grady Kloosterman


The SADS Foundation is celebrating the 20th Anniversary of No Ball at All! We are honoring Blake and Grady Kloosterman who came into the world with a shaky beginning, but are now thriving in spite of having Long QT symptoms. "Because of exceptional care from their medical team and compassionate expert guidance from the SADS Foundation, we have learned to make decisions for our children from knowledge instead of fear." says Megan Kloosteman, "Our children now enjoy lives full of fun, friends, and laughter."

If you would like more information, please contact Jan Murphy at 801-531-0937 or or Click Here. Together we can support families and save lives!

Thank You for Your Referrals 



SADS wanted to acknowledge all the help you have been giving us lately, identifying potential SADS cases in the news. We appreciate your referrals, as many times we do not already know about the event. We have alerts in place, but sometimes there is little or no media or they slip under the radar. Especially in the case of a death, every minute matters. So please send to us everytime there's an 


event you know about!

Joanna Bewick

Jennifer Coccodrilli

Laura Lamar

Natalie Stuckey

Sherri Bean

Kelly Ann

Genevie Echols


If you've sent us a referral this year re: an SCA event and we did not include, please Email David so we can ensure you make it in the next one! 

American College of Cardiologists Conference - Washington, D.C.


The SADS Foundation will have several representatives at the ACC conference on March 29-31 in Washington D.C. including Drs. Susan Etheridge, Charles Berul, Peter Schwartz, and Samuel Viskin as well as staff members Alice Lara, Christine Rice and Jan Murphy. This conference is an exceptional opportunity for learning from prominent experts in cardiology and networking with key business and community leaders to establish partnerships for the programs of the SADS Foundation



Changes to QTdrugs lists

March 19, 2014

Based upon our analysis of emerging evidence and official drug labeling, the following changes have been made to the lists:

Aripiprazole (Abilify®, Aripiprex®) is a drug used for the treatment of psychosis or as an adjunct when added to antidepressants for patients with major depression.  Aripiprazole has been added to the list of medicines with Possible Risk of Torsades de Pointes.

Pentamidine inhalation formulation (Nebupent®) h as been removed from the list of drugs with risk of torsades de pointes.  The intravenous formulation of pentamidine remains on the list of drugs with Risk of Torsades de Pointes.

For patients with congenital long QT syndrome (CLQTS), we recommend that drugs appearing on any of the QTdrugs lists should be avoided, unless no other option is feasible. For this reason, Aripiprazole will be included on our list of Drugs to be Avoided by Patients with Congenital Long QT Syndrome.

CredibleMeds relies on charitable contributions and grants to support the website and to maintain the QTdrugs list. Please visit our website by clicking here and become a supporter with your donation.

Thank you for your interest in



Patient-Centered Care: Improving Health & Reducing the Costs of Healthcare

As healthcare in the United States continues to evolve, many have voiced concerns over the rising costs associated with medical care and treatment and subpar health outcomes. Most current, long-standing models of healthcare focus on disease-centered care, which relies heavily on physician directives and medical testing tools and standards thought to benefit the patient. Patient-centered care 
shifts that focus towards the patient's experience and assessment of how well their physician is meeting their healthcare needs, and allows for a more interactive, process-driven model where the physician and the patient work together as a team to identify physical and behavioral problems and address them collaboratively. This shift offers the patient more engagement in their care, providing a more active dialogue that can improve patient outcomes, as patients are more invested in compliance with a physician's directives regarding medication, therapy, and/or medical treatment. This personalized approach to medicine has also been associated with lower costs, as the physician/patient relationship allows the physician further insight into a patient's condition, which may mean fewer unnecessary screenings, laboratory tests, and specialty referrals. As the world of healthcare continues to change, patient-centered care models provide an opportunity to improve overall health outcomes, reduce healthcare costs, and improve the physician/patient relationships necessary for effective, humanistic healthcare. Click here for more information on patient-centered care models.


 Wyatt's Story


Wyatt went down August 2012 and was placed into a medical induced hyperthermia coma at University of Louisville for 36 hours. He was in CCU for 9 full days.  I am proud to announce that Wyatt is 100% and attending Galen College of Nursing in

Louisville to pursue his love for medicine as a Registered Nurse.  He is on track to Graduate September 2015 from the RN program. He now has a MedTronic defib/pacemaker. 


Just a pic of a SADS survivor and me Jan 2014.

Fundraising and Media Packets 



The SADS Foundation has developed packets for volunteers to use for guidance in planning fund-raising
events or in contacting and speaking with the media. These packets offer information and samples of materials that can be used to help raise funds or awareness of SADS conditions or the SADS Foundation. Please contact Jan Murphy at 801-531-0937 or, to receive these packets by email or snail mail. 

New SADS Staff Members 

Director of Family Support
Matt Siemionko, MPH

Having worked almost exclusively in the non-profit world during my career, I am thrilled to become a member of the SADS team in providing information, education and support for families impacted by SADS. I received my Masters in Public Health in 2011 from the University of Utah, with a focus on public policy and chronic disease. My work experience has focused primarily on health care, fund development, and policy and advocacy for the medically underserved and people with chronic health conditions. I look forward to working with children and families in identifying potential risks and/or signs of an underlying SADS condition, and connecting families with medical professionals and supportive services so that children diagnosed with SADS can live happy, healthy lives.

Family Support Coordinator

Jenny Hoggard


Jenny is very excited to join the SADS foundation team and to have the opportunity to get involved in the non-profit sector. She graduated from the University of Utah in 2009 with her Bachelor's of Science in Health Promotion and Education and in 2013 with her Master's of Public Health. When Jenny is not working, she love reading, hiking in Southern Utah, camping with her family, and attending University of Utah football and basketball games.   




Devons Beat 5-K

Lincoln, MO

Texas Hold'Em


Folsom, CA

Bike the Drive 
Chicago, IL

Duke Sudden Cardiac Death in Athletes Symposium


Durham, NC




The SADS Foundation

Alice, Carol,  Christine, Matt, Connie,  Jan, Jenny, Sarah, Grace, David and Brandon