Sudden Arrhythmia Death Syndromes Foundation
In This Issue
Vote for SADS!
Upcoming Events
Climb to Conquer SADS
AED iPhone App.
SCA Coalition Update
NY Seminar Re-cap
News from NHLBI
Girl Online
SADS Quick Poll: We're updating records and want to know your skills and talents!
Chase Giving Logo
Vote (for FREE) on Facebook and SADS could win up to 250,000!
Don't wait-- the campaign ends July 13TH!

Upcoming Events

Become part of the 16th annual "No Ball at All" campaign!

Climb to Conquer SADS -Mt. Rainier, WA -July 7-11, 2010

Girl's Night Out
-Union, NJ -July 9, 2010

The 3rd Annual Run for Rosanna -Van Nuys, CA -July 24, 2010

5th Annual Ryan Weidler Golf Tournament -Norristown, PA -August 9, 2010

4th Annual Christie's Heartoberfest -Ballston Lake, NY -September 18, 2010

Layton Oktoberfest -Colorado Springs, CO -September 18, 2010

Sing it for SADS 2 -Dunmore, PA -September 25, 2010

To add to your special fund-raising event please contact Laura or call 800-786-7723

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So many things are happening at the SADS Foundation! Don't miss a thing, and enjoy this month's e-newsletter.
Bob Devries has taken his quest to visit all thirty MLB fields to the limit by visiting 8 parks in just 8 days
Here's what remains on his whirlwind tour of 8 parks in 8 days:
Bob at game 11: Rogers Centre, Toronto
Bob on the field-game 11 small size

--June 24: Seattle, WA
--June 25: Oakland, CA
         -June 26: San Francisco, CA
--June 27: Los Angeles, CA
--June 28: San Diego, CA

Visit Bob while he's at a park near you!  Be sure to order a Where's Bob? T-Shirt and take a picture of you and Bob at the stadium!  To see the complete Where's Bob? schedule, visit his website.

Live in the Chicago area? Check out the windy city showdown July 3-4, 2010!

Still want to be a part of the Where's Bob? team but can't make it to a game?  You can support him by ordering a Where's Bob? T-shirt

Don't forget to send us a picture of you wearing your Where's Bob? T-shirt for our website!
Climb to Conquer SADS: July 7-11, 2010
The 4th annual Climb to Conquer SADS is coming up soon!  We're thrilled to announce that this has been the most successful year of Climb to Conquer SADS yet.  And it's all thanks to our wonderful families and climbers.  It's not too late to get involved!  Contact Laura or call 800-786-7723.
Climber Bryson Williams matched with the Lentino family
Climber Bryson Williams

The Lentino Family and Chicago Area "QT"s
Lentino Family

Shannon and Lily Kiss in memory of Wayne Sawyer
Kiss-Sawyer Family
Climb leader, Brian Hoots matched with the Kiss-Sawyer family
Climber Brian Hoots

Visit our website to meet all the Climb families and their climbers.  Watch for pictures from this year's climb in the next e-newsletter!
AED iPhone Application
In May, Miami University announced the HEARTifacts iPhone application designed to locate Automated External Defibrillators (AEDs) in an emergency.  The application integrates GPS and augmented reality, allowing users to quickly locate AEDs. AEDs are in various public and private locations, but aren't always easy to find, especially in an emergency situation. In this application, users can hold up their iPhone and be directed to the nearest AED by an arrow that overlaps the output of the camera's viewfinder, a technology known as augmented reality. The application also has an educational component and gives the user valuable information on heart health awareness.

Designed by Miami University students of various iPhone AED app Imagebackgrounds, the HEARTifacts app is one of the semi-finalists of the What's Your Issue-Film Your Issue 2010 international youth competition, which highlights solutions to front-burner issues from global youth 14 to 24. The winners of the competition have yet to be announced.  Click here to see their YouTube video submission and read the Miami University article.

The sudden cardiac arrest coalition is bigger and better than ever this year! You might have heard that the coalition is planning two special events in early October to celebrate the beginning of the congress-appointed National Sudden Cardiac Arrest Awareness Month.  There will be a newsmaker speech at the National Press Club in the morning and an awareness event on the hill in the afternoon.  The steering committee is working hard on state report card items to present at the event as well working to create an exciting and innovative way of raising awareness among congress members and their staff.  This will set the stage for follow-up items and legislation in the years to follow.

Capitol HillHere's a list of a few of the organizations who have joined the coalition in support of preventing sudden cardiac arrest through legislation and public awareness:

-Assoc. of Black Cardiologists
-Alliance for Aging Research
-National Athletic Trainers Assoc.
-Am. Soc. of Exercise
-Soc. for Women's Health Research
-Cardiac Electrophysiology Society
-Initial Life Support Found.
-Am. Assoc. of Cardiovascular and Pulmonary Rehabilitation
-Nat. Forum for Heart Disease and Stroke Prevention
-Preventive Cardiovascular Nurses Assoc.
-Am. College of Sports Medicine
-Am. Assoc. of Critical Care Nurses
-Center for Resuscitation Science
-Black Women's Health Imperative
-Internat. Assoc. of Fire Chiefs

Stay tuned for more details about the exciting events happening in October!

SADS New York Family Seminar Re-Cap
On Saturday June 5th SADS partnered with the NYU Langone Medical Center Cardiovascular Genetics Program to provide a family seminar. Three physicians from the program spoke to over 70 family members and school nurses. Participants learned the latest information about disease stratification for the various SADS conditions including: Long QT Syndrome, Brugada Syndrome, and Catacholiminergic Polymorphic Ventricular Tachycardia (CPVT). After providing an overview, Dr. Silvia Priori, SADS board member and international SADS expert, emphasized how the current knowledge we have about risk stratification for each SADS condition plays an important role in recommending - or not - recommending an ICD. 

NYU Smilow BuildingDr. Steve Fowler, an adult electrophysiologist, provided a presentation on ICDs. Dr. Fowler emphasized the importance of correct programming to decrease inappropriate shocks and have the best overall experience with an ICD with regard to activity levels.

Dr. Steven Fishberger, pediatric cardiologist, assured families that even with some of the strategic challenges with ICDs in young children, the technology keeps improving and parents should not be afraid if they are needed to manage their child's risk.

The patient panel consisted of three different perspectives. Annie Lucatourto and her father, Anthony shared their story of not having an ICD to manage Annie's risk for LQTS type 1.  Annie is our youngest panel member so far - thank you Annie! Greg Totero and his father, Charlie, shared their story which included Greg growing up with an ICD after surviving a cardiac arrest at age 7. Betsy Ernst, diagnosed with ARVD, shared her story as a participant in the ICD Sports Registry.
NHLBI Working Group
Research ImageThe National Heart, Lung and Blood Institute (NHLBI) formed a working group comprised of experts in pediatric cardiology and electrophysiology, adult cardiology, epidemiology, biostatistics, sports medicine, child psychiatry, health economics, ethics, oncology and newborn screening.  The group met on April 12-13, 2010 to develop a research agenda and to identify resources to evaluate whether screening for sudden cardiac death (SCD) in the young would effectively reduce SCD and add health care value. Visit our website to see the group's agenda and strategic plan.
Alice, Laura, Joanne, Heidi and Adrienne

SADS Foundation
508 East South Temple, Suite 202
Salt Lake City, UT  84102