SADS 20th Anniversary Logo







December 2014


In This Issue:
On our way to $100,000!
  
The SADS Foundation is excited to say 2014 has been a success!! Because of you, our amazing families, volunteers, and supporters throughout the years, we have achieved the following:
  • More than 35,000 families have received direct support through phone calls, e-mails, physician referrals, and outreach.
  • Nearly 100,000 awareness pieces have been distributed to families and healthcare providers.
  • Viewed as a leader in medical education by medical professionals, organizations and institutions nationwide, we have provided nearly 100 seminars that have educated 5,000 providers
  • Seven conferences have been held in five different locations bringing more than 1,000 medical professionals and family members together to share and learn the most recent information about SADS conditions.
Additionally we have established two new initiatives to save more lives!

Heart Safe School Accreditation (HSSA) is already on its way in five states. HSSA makes certain that school teachers, coaches, nurses and students know what to do in the event of a sudden cardiac arrest and that an AED will be close at hand.

SADS Foundation Speakers Bureau will educate front-line health professionals to provide for better recognition of SADS conditions by ensuring that primary physicians, ER doctors and school nurses know the signs and symptoms in order to better connect patients with a SADS cardiac specialist.

Last year because of you, we met our goal of $75,000!

However, this year, with the establishment of two new initiatives in addition to our already established programs, we need to raise our goal. Please help us to reach $100,000 so that we may continue to better serve our families with the latest changes and developments in the SADS community.

Donate today to support families and save lives!!

For further details, please contact Director of Development Jan Schiller at 801-531-0937 or jan@sads.org.
SADS 8th International Conference Registration Opens
 
The SADS Foundation is excited to announce that website registration for our 8th International Conference is now LIVE! We've been working diligently on planning what we expect to be our most exciting conference to date, with input from prior participants and families in order to ensure that conference activities are engaging, up-to-date and relevant to conference participants.

Rest assured we've kept a lot of our popular core components, like keynote presentations from expert physicians and the Healing Wall ceremony, as we have received a lot of positive feedback about those portions of the program. We have also incorporated some new activities into the program, including a Fireside Chat conversation with Dr. Michael Ackerman and Dr. Silvia Priori, and a series of Breakout Sessions, with multiple opportunities to get questions answered, network with other families, and learn more about how to manage SADS conditions.

For more information on the conference including the draft agenda, how to register, and details on how to get involved with different aspects of the program, please click here or contact Matt at matt@sads.org or 800.STOP.SAD.

Brittany's Trees
 
The volunteers at Brittany's Trees are excited to sell out early this year with more than 1,500 trees now shining in Carol Stream neighborhoods and beyond!

Appreciation is extended to the following:
  • 150 VOLUNTEERS that either helped with lunch, delivery, set-up, decorating or clean-up.
  • The TEAM LEADERS who donated their trucks, vans, trailers, etc.
  • EVERYONE who donated their time on a Holiday weekend in cold weather to kick off this Christmas Season in a special way.
It's the participants who are Brittany's Trees and who helped raise more than $30,000 for the SADS Foundation for the second year! We are genuinely touched by the warmth of the holiday tradition and the difference it makes for families with SADS conditions.
Using Big Data to Answer our Questions  

Big Data is a buzzword in the current healthcare landscape and was a key concept addressed at the American Heart Association's Annual Scientific Sessions held in Chicago last month. The ability to access and analyze large data sets can improve patient outcomes and enhance the ability to anticipate and treat illnesses. Health data is collected from us every day-at the doctor's office (electronic medical record), with our iPhone apps, getting an EKG, etc. But collecting and using this information for research and patient is the new, exciting frontier in medicine.

 

The SADS Foundation is jumping on board, currently partnering with UCSF on the Health eHeart Study-an ambitious study to end all heart disease-including SADS. This large, online study uses technology and Big Data to collect information from people around the world that can be used to:

 

  • Help researchers and patients develop new and more accurate ways to predict heart disease based on measurements, behavior patterns, genetics, and family and medical history
  • Create personalized tools you can use yourself to live a happy, healthy life with your SADS condition.
  • And much more!

 SADS is also a partner in Health eHeart Alliance and participated in the landmark Health eHeart Alliance Patient-Powered Research Summit (check out the video and the photo of the steering committee). Patients from all parts of the heart disease community worked with doctors and researchers to develop research projects-from the patient perspective-that will help drive the next wave of cardiovascular research in Health eHeart.

 

Sign up for Health eHeart today and stay tuned for the next big announcement about the SADS partnership.

A Message from Our Partners: Update on QTdrugs Website
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A message from Ray Woolsey, MD/PhD, President of CredibleMeds (the group that maintains the Drugs to Avoid list and website).

"CredibleMeds encourages patients with congenital long QT syndrome and their family members to always check the list of Drugs to Avoid that is maintained on the website www.crediblemeds.org before taking any medication.

For the patients' safety, CredibleMeds encourages everyone to be sure they are using the most up-to-date version of the list. 

Because the list of drugs to avoid has become very long (over 170 medicines) and because new medicines are added almost every month, it is essential that the most up-to-date version be used.  For these reasons, CredibleMeds considers it their obligation to notify those who are using the list when it has been changed. This requires that CredibleMeds be able to reach users by email. Since November 1, the website requires users to register and provide an email so they can be notified when the lists have been changed. Registration takes less than a minute and will make it possible for you to use the list safely and for maximum benefit. CredibleMeds uses the highest possible security protocols to protect any information that you provide and registration will not be used for any commercial purpose.

In response to feedback from patients, CredibleMeds has made improvements in the way the list can be downloaded.  Your continued feedback is encouraged by emailing info@crediblemeds.org"
Worldwide Candle Lighting to Remember Children


If you are a family who is bereaved because of the loss of a child (or a friend of such a family that wants to show support), please consider joining the Worldwide Candle Lighting on Sunday, December 14 sponsored by The Compassionate Friends. To find a service in your state, please visit Compassionate Friends.

The mission of The Compassionate Friends: When a child dies, at any age, the family suffers intense pain and may feel hopeless and isolated. The Compassionate Friends provides highly personal comfort, hope, and support to every family experiencing the death of a son or a daughter, a brother or a sister, or a grandchild, and helps others better assist the grieving family.
Rewarding Research Initiatives

To encourage the next generation of researchers in SADS conditions, we are proud to announce that we will once again be presenting the Courts K. Cleveland Jr. Young Investigator Awards in Cardiac Channelopathy Research during next year's Heart Rhythm Society Scientific Sessions in Boston, MA. 

This program is in its 7th year and continues to gain great momentum with more and more researchers applying each year!  This is exciting for our SADS community and we look forward to highlighting the winners and their great contributions towards advancing the science of cardiac channelopathies next May! For more information, please contact Christine at christine@sads.org.
ECG Screening for Infants

Electrocardiographic (ECG) screening in infants and children who may be at risk of sudden cardiac death is controversial, and both rational and emotional arguments have often been given equal weight.  A group of SADS Scientific Advisors including Michael Ackerman, MD, PhD, Phil Saul, MD, Peter Schwartz, MD, and John Triedman, MD will have their article entitled Rationale and Objectives for ECG Screening in Infancy published this month in Heart Rhythm.  Their important paper discusses the fact that Long QT syndrome (LQTS) satisfies several criteria that may make ECG screening worthwhile: it is not rare (~1 in 2000 births); ECG diagnosis is feasible and can be used to trigger appropriate genetic testing; it causes approximately 10% of cases of sudden infant death syndrome (SIDS) as well as deaths in childhood and later in life, and effective treatments are available. Screening the infant may also lead to screening in family members and the diagnosis in the affected infant can also prompt the detection of asymptomatic but affected family members.

The authors conclude that neonatal screening is cost-effective by conventional criteria, and with a corrected QT (QTc) cutoff of 460 ms in 2 different ECGs, the number of false positives is estimated to be low (~1 in 1000 births). Parents of newborn children should be informed about LQTS, a life-threatening but treatable disease of significant prevalence that may be diagnosed by a simple ECG.
EVENTS
Jennifer's Jewelry Trunk Show 
December 10th through the 31st 
Online (CLICK HERE
3rd Annual Coconut Creek
Luminary Night
 
December 6th, 2014 
Fort Myers, Florida
Feel good about shopping for family and 
friends (or yourself!); 25% of proceeds will be matched by Jennifer's husband's company and donated to the SADS Foundation! 

Celebrate Wayne 
December 12th, 2014 
Atlanta, Georgia

If you'd like us to highlight your upcoming SADS
 
event, or are interested in starting one of your own, please contact jan@sads.org!

Milk and Cookies
December 13th, 2014
Charlotte, North Carolina 
 
 

Sincerely, 

The SADS Foundation

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