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SADS E-NewsletterApril 2011
In This Issue
SADS International Conference
Scientific Advisor in the News
Help SADS Help Families
Advocacy Update
International SADS Groups
2011 Climb to Conquer SADS
Medical Education Update

Upcoming Events  

 

Tommy Marren Beef and Beer -April 30, 2011 -Aston, PA  

 

PACES (Pediatric and Congenital Electrophysiology Society) Meeting -May 3, 2011 -San Francisco, CA   

 

HRS Annual Scientific Sessions -May 4-7, 2011 -San Francisco, CA   

 

ARVD Family Seminar 

-May 14, 2011

 

National EMS Week  

-May 15-21, 2011 

 

Cache Miller's 6th Birthday Party  

May 18, 2011 - Jump Around Utah, Salt Lake City  

 

National CPR/AED Awareness Week -June 1-6, 2011 

 

Shannon Kiss "Celebrate Wayne and Conquer SADS" Dinner -June 3, 2011 -Atlanta, GA 

 

Keith L. Young Memorial 5-K Run -June 11, 2011 -Green River, WY     

 

 Fundraiser in Memory of Stephanie Mejias -June 23, 2011 -Union, NJ     

 

Climb to Conquer SADS -July, 7-10, 2011 -Washington State 

 

"Where's Bob?" in NYC -Cubs vs. Mets -September 11, 2011 -New York, New York 

   

 "Tri" for Abbey Triathlon in memory of Abbey Wambach -Sep. 24, 2011 -Rockville, SC

 

SADS International Conference -Oct 1-2, 2011 -Atlanta, GA

50% off registration now through September 1st!  


For information about any of these events, or for assistance planning your own special event, contact

Laura or call 800-786-7723.


17th Annual No Ball At All
No Ball 2011

Contact Laura or call 800-786-7723 to get involved!

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Greetings!
Check out the latest from the SADS Foundation!
The 5th International SADS Foundation Conference is an event that you won't want to miss! On Saturday, October 1st, families and physicians will come together to learn from the experts.

New this year will be Sunday sessions (8:45 am-12:30 pm) on the Importance of Screening Family Members, SADS "Keeping Hearts Beating" Awareness Campaign, AED Sudden Death Safety Net - Can it Work?, Fundraising for SADS and Ask an Expert Panel.

Special SADSConnect activities (ages 9-18) will be held on Saturday and Sunday at the same time as the adult sessions-including a video project and CPR training.

And, Saturday night we'll have a special Gala 20th Anniversary and Volunteer Awards Dinner-hosted by Dr. Michael Vincent, the Founder of the SADS Foundation. Oh, and did we mention registration is 50% off until September 1st?  Register your family today!

 

See the conference agenda.
Dr. Sami Viskin of Tel Aviv University's Sackler Faculty of Medicine and Scientific Adviser to the SADS Foundation has recently published research in the Journal of The American College of Cardiology regarding a new method for screening for conditions that cause sudden death.  Dr. Viskin developed a special test called the "Viskin Test" to better recognize patients with a higher risk of sudden cardiac arrest, specifically athletes.
Dr. Sami Viskin

Dr. Sami Viskin


The "Viskin Test" is based on Dr. Viskin's discovery that slight abnormalities between normal and at-risk patients could suddenly be made more visible using a simple bedside test that requires a subject to suddenly stand up. When standing, at-risk patients will experience a measurable difference in a portion of their heart rate called the QT interval. The difference can be detected by an electrocardiogram (ECG).

Read more. 

Help SADS Reach ME's and Coroners

Last month we told you about our family "safety net" system in which we reach out to all areas of a community upon hearing of the loss of a young person. We speak with hospitals, medical examiners, school personnel, family members, local physicians, and local media to try to create better awareness and education and provide support in a community affected by such a tragic loss.  

  

Safety NetMuch time goes into researching information on the appropriate medical examiner or coroner when we hear about these deaths.  Now, we're asking SADS volunteers to help us with this important task so that we can act even faster in the event of a sudden death. 

 

Here's how you can help NOW:

  1. Find the contact information for your local medical examiner/coroner via google, your state health department, etc.  We can help you get started, just give us a call or email
  2. Email Adrienne or call 800-786-7723 with the contact information for your ME/Coroner.   
  3. We will then send you the SADS ME/Coroner information kit to provide to your ME/Coroner or if you prefer, we can send them the information directly.  

For more information, questions, and to get involved contact Adrienne or call 800-786-7723.

 

Working together we can help families who have suffered a loss find answers and support in their time of need.   

Advocacy Update

Congresswoman SuttonThe Josh Miller HEARTS Act (H.R. 1377) was introduced by Congresswoman Betty Sutton (pictured left) of Ohio in 2010.  This important legislation establishes grants to place AEDs and train staff in schools across the country. Last year it passed in the House but was not successful in the Senate.  This year Sutton has been working on this legislation and has re-introduced the bill.  The SADS Foundation has officially endorsed the bill through Congresswoman Sutton's office and will be watching this bill closely as it moves through the legislative process.   

 

In other advocacy news, The SADS Foundation has joined the Coalition for Health Funding by signing onto a letter to ensure funding for public health programs (Function 550) in the FY 2012 budget resolution.  In addition, the SADS Foundation continues to advocate for federally funded research and public access to the valuable information that is produced by these institutions. 

Support Around the WorldThe SADS Foundation will be in San Francisco for the Heart Rhythm Society Meeting on May 3-7, 2011.  In addition to attending scientific sessions and exhibiting, the SADS Foundation is proud to announce the first International SADS Booth at the HRS Exhibition Hall.   

 

We're asking all our international friends to send along any materials or information you may want displayed at this special booth.   

 

Contact Adrienne or call 800-786-7723 with your information or any questions you may have.   

Are you looking for a unique way to support the SADS Foundation? Join us and sponsor a climber for the 2011 Climb to Conquer SADS! July 7-9, our professional climbers will ascend Mt. Rainier in Washington State - carrying your family's or company's flag to the summit.  It's an easy and fun project for your family...and will make a huge difference in the number of people we can reach.

 Climb to Conquer SADS banner

SADS Attends the American College of Cardiology

Annual Scientific Sessions

Alice Lara & Christine Fontanella attended this year's American College of Cardiology (ACC) Annual Scientific Sessions in New Orleans from April 2-5. 

ACC Logo

The ACC conference presents a great opportunity for us to meet with physician experts who are attending the sessions as well as to network with our many important corporate partners. As always, the sessions were filled with cutting-edge science and were presented and attended by some of the leading cardiovascular experts world-wide.

 

This year one of our conference goals was to speak to exhibiting companies who might be interested in attending and sponsoring our upcoming International Conference in Atlanta. We were greeted with excitement about the CME event and look forward to seeing everyone in October in Atlanta.  We also had the pleasure of sitting down with representatives from both cardiac device companies and genetic testing laboratories to further discuss our educational and awareness plans for 2011. An industry-sponsored event for the SCAC steering committee provided a wonderful opportunity to meet face-to-face with our colleagues and meet some physician researchers .  All in all, the conference was very successful and we have already begun our preparations for attendance at our next major event, the Heart Rhythm Society Annual Scientific Sessions in San Francisco next month.

Sincerely,

Alice, Laura, Christine, Adrienne, Sarah, Amy and Bonnie
The SADS Foundation