Family History Saves Lives
International Conference Recap
Support Group for Women 40+
FDA Notice: Zofran
SADS Music Video
SCA Survival Rates: New Info


Take a Stand Against SCA
October 26, 2011 -Washington, D.C.

Brayden's Buddy Charity Golf Tournament
November 4, 2011 -Gilbert, AZ

Brittany's Trees

November - December 2011 - Carol Stream, IL & Nationwide

2nd Annual Texas Hold 'Em Tournament and Benefit Dinner
January 7, 2012 -Folsom, CA

For information about any of these events, or for assistance planning your own special event, contact Laura or call 800-786-7723

Brittany's Trees 2011 
 Brittany's Trees

Join Our Mailing List


We hope you're enjoying the autumn season.  Here's the latest news from the SADS Foundation!

Talking More Than Just Turkey: Knowing Family History Saves Lives
Every year, at Thanksgiving time, families gather together to eat dinner and give thanks. Why not put a little spice on this year's table and give your family a fresh helping of essential information. The Surgeon General has declared Thanksgiving to be National Family Health History Day. The SADS Foundation encourages families to talk with your relatives this holiday season, get their history using our Short Questionnaire and help them take the steps necessary to get screened. This will save lives!

The number one warning sign of a SADS condition is family history. What better time to educate your family than when you have them all in one place. Saving the lives of your family could start by simply collecting medical histories. A family history of unexplained death before the age of 50 or any history of a SADS condition (e.g. Long QT Syndrome, Brugada Syndrome, Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT) or Arrhythmogenic Right Ventricular Dysplasia/Cardiomyopathy (ARVC) should prompt other family members get screened . When it comes to your family's lives, don't take a chance.

Getting your family's health history is as simple as talking about it, writing it down, and then sharing it. If SADS conditions run in your family, a great reference source is the Pedigree Project Toolkit. In this Kit information regarding family history, risk, and testing is available to share with one's family members. If you are interested in receiving this Toolkit, download at or contact

SCAC Invitation
October is congressionally appointed as Sudden Cardiac Arrest (SCA) Awareness month. The SADS Foundation is a proud member of the SCA Coalition, a national coalition of over 50 non-profit organizations working together to bring greater public awareness and supporting beneficial legislation regarding SCA. To commemorate this month, the SCA Coalition will be holding an event on Capitol Hill, "Take a Stand Against Sudden Cardiac Arrest" today Wednesday, October 26th from 4-6PM in the Rayburn House Office Foyer. Join the SADS Foundation and the SCA Coalition on Capitol Hill to help raise awareness of SCA and the proper emergency response methods of CPR and AED use. 

If you're in the area, stop by the Rayburn Foyer for this exciting event!  And be sure to follow the SCA Coalition on Facebook for updates and photos from today's event!
Quilt Drawing
Linda Dellinger
Linda Dellinger with her beautiful quilt
Make a $10 donation and be entered in the SADS Foundation Quilt Opportunity Drawing*.  Linda Dellinger (pictured), spent countless hours creating this quilting masterpiece in honor of her daughter Stephanie and granddaughter, Sarah, who live and thrive with Long QT.  Make a donation on-line (specify it is for the opportunity to win the quilt). Drawing will be held on December 10, and we'll ship it to you in time for the holidays!  
*no purchase required


New Research Shows MRIs Safe for ICD Patients
New research from cardiac electrophysiologist and biomedical engineer Dr. Henry Halperin and a team at John's Hopkins University (JHU) indicates that patients with implanted cardio defibrillators (ICDs) can now undergo magnetic resonance imaging (MRI).  MRIs are commonly used to detect certain cancers and are especially useful for imaging of the brain and spinal cord.  According to JHU, more than 700 patients with ICDs have safely undergone MRI exams at their hospital.  The study, conducted in conjunction with Rambam Medical Center in Haifa, Israel, included 438 patients with ICDs.  Researchers found that with proper precautions, patients with pacemakers and ICDs can have an MRI scan with very low risk of the device malfunctioning, moving, heating or causing abnormal rhythms due to magnetic and radiofrequency energy generated by the exam.  The safety protocol includes device selection (models manufactured before 1998 are still too dangerous for an MRI), programming  and careful patient monitoring during the procedure.   Patients should then follow up within six months after having an MRI to inspect their device and programming. 
Volunteer Awards
Volunteer Award Winners: Shannon Kiss and Marissa Smith pictured with Laura Wall, Alice Lara, and Dr. Mike Ackerman
Healthcare providers and families joined us in Atlanta on October 1-2 to hear cutting edge information on SADS conditions, have questions answered by our panel of world renowned physicians, participate in the SADSConnect kids track, celebrate those living and thriving with SADS conditions and remember those who have been lost.  A gala celebration helped usher in the SADS Foundation's 20th Anniversary. Awards were presented for the 2011 Volunteers of the Year: Shannon Kiss and Marissa Smith. Dr. Michael Vincent and Katherine Timothy were recognized for their achievements in the field and the formation of the SADS Foundation.  The content presented by our esteemed speakers was top notch!

We have been thrilled with the positive feedback we have been receiving from attendees and we are confident that you will want to join us for next year's conference in Salt Lake City, Utah  (October 13-14, 2012)!

Couldn't make it? Please take a minute to fill out this short survey to help us plan for future conferences.
Also, be sure to visit the SADS website to see presentation slides from Dr. Vincent and Katherine Timothy's emotionally powerful presentations on the history of the SADS Foundation as well as the conference syllabus and photo album.  
SADS Wins State Farm Go to Bat Challenge Twice!
Go To Bat
State FarmŪ and Major League BaseballŪ (MLB) recently announced that the SADS (Sudden Arrhythmia Death Syndromes) Foundation has earned their second $18,000 charitable donation in the State Farm Go To Bat program - an online, charitable giving initiative driven by the State Farm commitment to helping communities get to a better state, bringing the total gift to $36,000!

Kudos to all of our friends and family members who went to bat for the SADS Foundation!   

As part of winning, two SADS Foundation fans were chosen to attend the World Series! One of the winners, Janice Barry wrote:  "I am thrilled to have "won" these funds for the SADS organization..having personally benefitted from the work of the organization as I lost a beautiful 19 year old daughter in 2008 to undiagnosed Long QT, which we now know is present in the paternal side of the family. A cardiologist initially pointed us to your organization, and I have been a recipient of the emails and newsletters in the last few years and have found the work of the organization to be a comfort and source of valuable information."

Congratulations, Janice Barry and Gary Killingsworth and thanks to State Farm and Major League Baseball for this incredible gift!
Does Menopause Cause an Increased Risk for Cardiac Events in LQTS Patients?
EKG & HeartThe SADS Foundation has received multiple questions recently from patients regarding Long QT Syndrome and menopause. A paper published this year in Circulation, "Risk of Recurrent Cardiac Events After Onset of Menopause in Women With Congenital Long-QT Syndrome Types 1 and 2", helps to answer these questions.

The study consisted of 282 LQT1 and LQT2 women enrolled in the Long-QT Syndrome Registry. Multivariate analysis demonstrated that recurrent syncope risk was significantly increased for LQT2 women during both menopause transition and the postmenopausal period compared with that of the reproductive period. Estrogen therapy did not seem to have an impact on the associated risk. For LQT1 women, the study reported the opposite finding. LQT1 women showed a reduction in risk for recurrent syncope with the onset of menopause. The authors concluded that careful follow up and continued long term therapy is warranted in the LQT2 menopausal population.
New Support Group for Women Over 40
SupportMeet other women, discuss your concerns and your experiences and help us promote research about your experience of living with a SADS condition at this time of your life.
Contact Anne E. Maurer at, 800-STOP-SAD, or find her on Facebook to join.
FDA Notice Issued for Anti-nausea Drug, Zofran
FDAThe FDA released a statement in early October addressing safety issues related to the common anti-nausea drug Zofran (ondansetron) by GlaxoSmithKline.  The SADS Foundation has already advised patients with a diagnosis (or suspected family history) of Long QT Syndrome or Brugada Syndrome not to take this medication per the Arizona CERT and Brugada Drugs research lists.  Based on that research, Zofran has already been packaged with a label that indicates the drug causes a prolonged QT interval. 
However, the news from the FDA is especially important as the label will be amended to include a specific warning for patients with congenital Long QT Syndrome and also recommends that if administered, the patient should be monitored via EKG to ensure the patient's safety.  GlaxoSmithKline has been ordered by the FDA to conduct a QT study to determine the extent of the Zofran's affect on the QT interval.

Thanks to State Farm and Major League Baseball's "Go to Bat" campaign! Bob DeVries represented the SADS Foundation at Game 3 of the World Series Saturday night in Dallas. He also attended a special brunch for the winning charities. Who better to represent the SADS Foundation than our own Bob DeVries!?
music video on youtubeSarah Lenore, finalist in the 4th season of America's Got Talent, and international performer dedicated her song "Everything is you" to the SADS Foundation. Sarah asked for some short video clips from people whose lives have been touched by SADS conditions to incorporate into the music video.
Over the past month, we have received an overwhelming number of fantastic video clips from families across the country and are very excited to announce the release of the SADS music video. Visit the SADS website to watch the video and share it with your friends on facebook!  Be sure to subscribe to the SADS YouTube Channel for video updates and other fun happenings on YouTube.
Are you a female with an ICD living in the state of California?  Volunteers are needed to participate in a confidential study exploring the experiences of young women with an ICD.
This project offers participants the opportunity to share their ICD story and contribute to a better understanding of the female ICD experience, which helps health care providers better meet your needs.  Click here for more information, or contact Anne Maurer at or 800-STOP-SAD  to participate in this study.
Interesting Facts About Sudden Cardiac Arrest Survival Rates
The Cardiac Arrest Registry to Enhance Survival (CARES) indicates that each year, approximately 295,000 people in the US experience an out-of-hospital cardiac arrest. Unfortunately about 92% do not survive the event. Their landmark report studies 31,689 cases where a cardiac etiology is presumed and the following results were indicated:

* The mean age of victims is 64 years old

* 61% were male

* The survival of hospital discharge rate was 9.6%

* 36.7% of cases were witnessed by a bystander

* 33% received bystander CPR

* 3.7% were treated by a bystander with an automated external defibrillator (AED)

Though not necessarily related to SADS conditions in most cases, the statistics are interesting and point toward the need for better education of the general public on bystander intervention. Nearly half of cardiac arrest events are witnessed, but lifesaving measures are not administered in many cases. In the words of the principal investigator, Byran McNally, MD from Emory University, "If a pulse is not restored before EMS transport, additional efforts at the receiving hospital almost invariably fail."


We are encouraged by family stories we hear about the increased availability of AED's in public places and hope that these statistics will continue to change with increased knowledge and resources available to the general public.


Alice, Laura, Christine, Anne, Sarah, Adrienne, Amy and Brandon

The SADS Foundation