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Youth Poster Contest
SADSConnect Poster Contest!

This summer the SADS Foundation is running a POSTER DESIGN CONTEST!!

We would like to create a new poster that kids can take to their schools to raise awareness, and we want your help!

The poster theme is "Did you know kids with SADS can do this?"  And we need your great ideas. The winner of the contest will have their artwork turned into an actual SADS Foundation poster that will go to schools all over the country, and they will also be awarded a gift card!

Click here to see previous posters, contest entries, and to submit your own.

The winner will be announced at the SADS 6th International Conference in Salt Lake City, October 12, 13, 14. (you don't have to be present to win!)

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Register Today to Save 50%!

On October 12, 13, and 14 the SADS Foundation will host the 6th International Conference: Preventing Sudden Unexpected Death in the Young.  New this year will be Friday sessions and a special networking event that evening.  We hope you and your family will plan to join us for this informative and memorable event. 

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SADS School Nurse Champions

Last weekend, the SADS Foundation attended the National Association of School Nurses (NASN) Annual conference in San Francisco, CA. At this meeting, we announced the SADS School Nurse Champions Pledge--asking school nurses to help us carry our message into their communities, ensuring greater awareness and student safety.  We received over 200 pledges and will continue to gather them as the annual SADS Safe Schools campaign begins in August.
Health Care Reform: How Does it Affect SADS Patients?

By now you've heard that the Supreme Court voted to uphold the Affordable Care Act (ACA), but what does that mean for SADS patients?  As each and every individual needs health care, this will ensure that access including the 122 million Americans with pre-existing conditions will no longer be denied coverage or forced to pay higher premiums based on their condition. Also essential is the elimination of annual and lifetime insurance caps and the fact that insurance companies will no longer be allowed to discontinue coverage for individuals who receive dire diagnoses after coverage begins. We at the SADS Foundation are very optimistic about the affects of the ACA as we face the future.
Giana Chiaventone with Flat Bob at the playground! 
Flat Bob's Next Assignment: Vacation!
There have been some amazing photos taken with Flat Bob, have you been watching?  Flat Bob's next assignment is to take him on vacation with you! Whether it's hiking with your AED or relaxing on the beach, bring Flat Bob along with you!

Click here to print your Flat Bob and get going!  Then be sure to submit your photos and see what others have submitted here.

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Research: Fetal Heart Rate/Gestational Age Predicts LQTS

With the help of the SADS Foundation, researchers (Jason Mitchell, MD, D. Woodrow Benson, MD, Ph.D., Susan Etheridge, MD, Janette Strasburger, MD and Bettina Cuneo, MD) collected data from 547 normal fetuses as well as 42 fetuses with LQTS (group 1 with a family history and group 2 with fetal arrhythmias).  Their data concluded that there are "Shades of Bradycardia" in the fetal LQTS population and that fetuses with the lowest fetal heart rate/gestational age (FHR/GA) profiles are more likely to have complex arrhythmias or de novo mutations.  The use of gestational age along with fetal heart rate improves the diagnosis of LQTS in the fetus from 15% to 66% as compared to FHR only.  LQTS should be suspected in fetuses with FHR repeatedly < 3rd percentile for GA even if there is no other arrhythmia.  The authors suggest that these findings should improve the detection of LQTS in fetuses at all gestational ages.

More From the Medical E-newsletter...
Do You Have Concerns About Insurance Coverage?

Please participate in a research study that will help us understand who has coverage and who does not. This important study hopes to make health, life and travel insurance coverage more accessible for everyone.

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SADS Safe Schools--Coming Soon!

The annual SADS Safe Schools Campaign will take place this September.  This is a time in which we focus awareness efforts on the school setting as children spend the most time out of their day in school. It is vital that we ensure a safe setting for all students.  Sign up now to get ready with your materials and help raise awareness this September for SADS Safe Schools!

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Maureen Schulman
Patti Totero

Quilt Raffle A Huge Success!

A special thanks to Maureen Schulman and the Northern Star Quilter's Guild for their generous donation of a beautiful hand-made quilt for the SADS raffle.   
Greg Totero 

This month,
SADS Foundation volunteers Patti and Greg Totero of Cornwall, NY were in attendance to receive the final raffle check which totaled $5,380!
The SADS Foundation Receives NIH Grant for Disease Registry

Recently, the Foundation was selected to be one of 30 organizations to receive a special grant from the National Institute of Health (NIH) to update and enhance the SADS Foundation Pedigree Project as part of a collaborative disease registry tool for furthering genetic research more broadly.  This will not only help advance knowledge of SADS conditions but bring a better understanding of genetic diseases altogether. Stay tuned for details on the changes and how to get involved.
Registry Research Shows Reduced Subcutaneous ICD Complications

Data from the EFFORTLESS Registry, housed in Europe, shows the number of inappropriate shocks from the subcutaneous ICD (S-ICD) are decreasing at a steady speed, nearly 50% less than what has been shown in previous research. The S-ICD, unlike ICDs with transvenous leads that detect individual heart beats is more like an AED in that it detects entire rhythms.  The S-ICD "validates and certifies" a detected rhythm with "noise discrimination" before deciding whether or not to deliver a shock, thus making it a promising treatment option for future patients.
Rural AED Program: Sustained Funding!

Thank you to all those who regularly respond to action alerts and are active advocates for SADS patients.  The Senate Labor, Health & Human Services and Education Appropriations subcommittee has voted to increase funding of the Rural Access to Emergency Devices Program at $2.5 million.  That's nearly double what was achieved last year!  As advocates, we know our work is never done, but be sure to give yourself a pat on the back for this meaningful triumph.
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