SADS Quick Poll: We're updating records and want to know your skills and talents!
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,
To add to your special fund-raising event please contact Laura or call 800-786-7723
Climb to Conquer SADS
Sponsor a climber today!
Click here for more information.
|Follow us now
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
--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!
|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 backgrounds, 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.
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.
Here'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
-Assoc. of Black Cardiologists
-Alliance for Aging Research
-National Athletic Trainers Assoc.
-Am. Soc. of Exercise Physiologists
-Soc. for Women's Health Research
-Cardiac Electrophysiology Society
-Initial Life Support Found.
-Am. Assoc. of Cardiovascular and Pulmonary
-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.
Dr. 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|The 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,
oncology and newborn screening. The group met on April 12-13, 2010 to develop a research agenda and to identify resources to evaluate
screening for sudden cardiac death (SCD) in the young would effectively
SCD and add health care value. Visit our website to see the group's agenda and strategic plan.
Alice, Laura, Joanne, Heidi and Adrienne
508 East South Temple, Suite 202
Salt Lake City, UT 84102