Sudden Arrhythmia Death Syndromes Foundation
In This Issue
Quick Poll: Youth Support
Upcoming Events
Medical Education Program
NY Family Seminar
Pedigree Project
HRS 2010
New Research
Where's Bob?
Board Spotlight
National CPR & AED Awareness Week
Kids






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Upcoming Events

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

Benefit for Climb hosted by Shannon Kiss -Atlanta, GA - June 1, 2010

SADS Family Seminar at New York University -June 5, 2010
--Register here!

4th Annual Jamie Miller Invitational Swim Meet -Columbus, IN -June 4-6, 2010

Violette Levy's Graduation Celebration -Sarasota, FL -June 6, 2010

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

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

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

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

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

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Climb to Conquer SADS

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Greetings!
So many things are happening at the SADS Foundation! Don't miss a thing, and enjoy this month's e-newsletter.
SADS Medical Education Program - Goal Achieved!
Med Ed
By now you may have heard that the SADS Foundation was offered a challenge grant of $50,000 by Mr. Frederick Smith, President & CEO of Fed Ex. Mr. Smith lost his daughter, Wendy, a few years ago, due to a medical misdiagnosis of Long QT. He has become a staunch supporter of the work of the Foundation, and has offered this grant to the SADS Foundation in order to advance our Medical Education Program.

We are more than pleased to announce that we have not only met the challenge but we have surpassed it!  This means we will be launching the SADS Medical Education Program this calender year! Stay tuned for updates on this exciting new program as it unfolds. 

We are sincerely grateful to the family of Mr. Fred Smith for their continued support of the SADS Foundation.
SADS Family Seminar: New York
There is still time to register for the SADS NYU Family Seminar! This is for everyone even if you don't have a family member with an ICD. Come learn the latest research about genetic cardiac arrhythmias from one of the world's foremost experts - Dr. Silvia Priori.
 
Come learn about ICDs from true "experts" - those who live with them! Learn from families who do not have an ICD why that treatment was not recommended or chosen.
 
Statue of LibertyThe patient panel will include:

--A 12 year old who had an event-her LQTS is managed by beta blockers without an ICD.
 


--A young adult college student who experienced a cardiac arrest at age 7 and "grew up" with an ICD.


--A young adult woman who experienced a cardiac arrest a year ago and her "experience with life post-ICD has been wonderful"!


To register click here!  (School Nurses; click here to register)
Pedigree Project
Be one of the first 10 families to complete your pedigree and receive a free SADS goody bag for your whole family! The Family Pedigree Project assists SADS families to map out their own pJumpathonedigrees to identify other individuals who may be at risk. Completing your family health history (or pedigree) can save lives directly. After a child is diagnosed with LQTS or any other arrhythmia, other siblings may be at risk, as well as parents, grandparents, aunts, uncles and cousins.  With this program, we hope to identify and save even more lives at risk.


Click here to read about the project and get started today!


Heart Rhythm Society 2010
May 11-15, the SADS staff attended and exhibited at the Heart Rhythm Society's annual conference in Denver, Colorado.  Among several interesting scientific sessions, the SADS Scientific Advisors had a great meeting. 

Also, the SADS Young Investigator Award was given at the annual PACES (Pediatric and Congenital Electrophysiology Society) dinner.  This year, the award was given to two recipients: Edward Glasscock of Baylor University (below left) and Suraj Kapa of the University of Pennsylvania (below right with Dr. Ackerman).

HRS 7HRS 9

Volunteers came to show their support at the SADS booth.  A special thanks to: DeLores Peressini & the Badger Family (below left) and Glenda Stafford & the Layton Family (be
low right)HRS 6HRS 1
New Research About Beta-blockers and LQTS from HRS Scientific Meeting
Research was presented at the recent HRS meeting that concluded that propranolol (Inderol) has a significantly better QTc-shortening effect than metoprolol or atenolol. This research confirms what the SADS Foundation has been recommending for years and should lead to better protection for LQTS families.
 
Check our website for a summary of other abstracts/posters from HRS that are of interest to SADS families or watch for your copy of the 2nd Quarter SADS Literature Review coming in July.
Bob DeVries Cubs GameBob DeVries is traveling to every Major League Baseball stadium this summer to raise awareness of SADS conditions in memory of his wife Shawn DeVries.  You can follow along with Bob on his travels by checking the Where's Bob? page to see where he'll be next.  You can also find Bob on Facebook!  Next stop, Detroit!
Board Spotlight
SADS Foundation Board President, Dr. Michael Ackerman, has been Ackermanelected membership to the American Society of Clinical Investigation.  The ASCI is an honor society of physician-scientists, those who translate findings in the laboratory to the advancement of clinical practice. Founded in 1908, the Society is home to more than 2,900 members who are in the upper ranks of academic medicine and industrial healthcare.  Please join us in congratulating Dr. Ackerman for this prestigious achievement.

SADS Board Member, Dr. Silvia Priori, has been inducted to the Heart Silvia PrioriRhythm Society Board of Trustees. Dr. Priori is internationally recognized for her studies identifying the genetic basis and optimum therapy for patients at risk of inherited forms of cardiac arrhythmias. Her presence within the Heart Rhythm Society will help bring a focus on SCA and SADS conditions as they plan for the future.  Congratulations, Silvia!
National CPR and AED Awareness Week: June 1-7, 2010
Next week begins national CPR and AED awareness week.  In celebration of this, the National Safety Council is offering free emergencHeart w/ ECGy care training!  First Aid and CPR with AED is a three-hour online course that teaches participants how to respond should someone need assistance. First aid topics include breathing emergencies, sudden illness and injury, and bleeding. You can register for this online course by visiting the NSC website.
Sincerely,
 
Alice, Laura, Joanne, Heidi and Adrienne

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