Sudden Arrhythmia Death Syndromes Foundation
In This Issue
Quick Poll
Upcoming Events
Youth Discussion Day
We Want Your Story!
AAP Endorses Screening
Insurance Tips
Bystanders and AEDs
Research Opportunities
AEDTake the latest SADS Quick Poll about AEDs
Upcoming Events

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

Abbey Wambach Memorial Rawk Sitin Greensboro, NC - April 21-22, 2010

5th Annual Tommy Marren Memorial Beef and Beerin Aston, PA - April 24, 2010

SADS Family Seminar in Cincinnati, OH - May 1, 2010 --RSVP to Joanne

ARVD Family Seminarin Baltimore, MD - May 8, 2010

Keith L. Young Memorial 5K Race in Green River, WY - May 22, 2010

Brian Anderson Memorial Run in Washington Township, NJ - May 9, 2010

SADS Family Seminarat New York University -June 5, 2010
--RSVP to Joanne

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

Climb to Conquer SADS

Climb to Conquer SADS

Sponsor a climber today!

Click here for more information.
Meet your local contact today!
Join Our Mailing List
Join our cause

Facebook logo


Follow us now
Twitter logo

Here's the latest news from the SADS Foundation.  Please take a moment and catch up on the most recent happenings.
Thursday April 22: SADSConnect Youth Discussion Board Day
Tell your youth to log-on to the SADS discussion board and scroll down to the Youth Discussion section.

colorful youthThey can observe the discussion, or they can ask and answer questions, if they register.  There will be a youth discussion board day once a month on the third Wednesday of every month.  The SADS Youth Advisors will be participating and moderating. 

This is part of the newly revitalized SADSConnect Youth Program.

If you have any questions about the SADSConnect Youth program, please contact Joanneor call 1-800-STOP-SAD.
We want your story!
Have you ever checked out the living and thriving stories on our website?  Perhaps perused the healing wall?

Personal stories about an individual or a family experience with a SADS condition are very important in that they help newly diagnosed families to cope. They are also very powerful in conveying the importance and necessity of the SADS Foundation's mission: saving lives and supporting families. 

We're asking you to tell us your story. Tell us about your experiences with the diagnostic process and how you have adjusted. We will be updating the website regularly with these powerful and inspirational stories. Please send your story to Joanne
AAP Endorses Screening for ALL Youth
The American Academy of Pediatrics (AAP) has made some "sweeping, huge changes" in their screening recommendations for children. They are now recommending using a form similar to the SADS Risk Assessment Form to screen all youth--not just athletes. "We commend AAP for adapting the recommendations of the SADS Foundation and screening everyone when visiting their pediatrician or primary care physician", said Alice Lara, SADS Foundation President and CEO. "This early detection of genetic heart conditions will save the lives of many children who will be able to receive appropriate treatment before a catastrophic event."
Dr. Michael Ackerman, Mayo Clinic, and SADS' Board Chair said,  "We know that by following these screening recommendations, we can prevent at least half of the sudden deaths in young people."
Tips for Getting Insurance to Pay for your AED
As with any medical service or device, it may take an effort to get your insurance to pay for it!  And remember to appeal, appeal, appeal!  As more people advocate for their insurance to pay for an AED, it will get easier.

First, get a prescription from your physician. Call a nurse case manager, or an "ask a nurse" number to see if they have any recommendations.

Find out what your policy's appeal process is and FOLLOW IT to appeal a denial. Get a letter of medical necessity(LMN) from your doctor and/or from SADS to send to your insurance company.

If you don't want to wait to purchase the AED, you can get one without a prescription (at Costco, Amazon and other stores).

Health Insurance Tips and Resources:
SADS AED Policy Statement
AED Resources on the Web
New Research Confirms Bystander use of AEDs Saves Lives
researchA recent study published in the Journal of American College of Cardiology. The study surveyed 13,769 out-of-hospital sudden cardiac arrest (SCA) events. An AED was used before arrival of emergency medical services (EMS) personnel in 2.1 percent of cases. Survival in the overall group was 7 percent, compared to 24 percent when an AED was applied before EMS arrival, and 38 percent when an AED shock was delivered before EMS arrival. Use of an AED before EMS arrival increased the odds of survival by 80 percent!

Further findings report that on average 470 people are saved each year via bystander use of an AED. The study also looked at the following types of bystanders: police, lay volunteer, health care workers, and unknown and found that lay volunteers have the highest survival rate for an out-of-hospital event. 

In conclusion, application of an AED in communities is associated with nearly a doubling of survival after out-of-hospital cardiac arrest. These results reinforce the importance of strategically
expanding community-based AED programs.
Calling all Long QT type 3 Patients in the Bay area!
The Gladstone Institute of Cardiovascular Disease is seeking patients diagnosed with Long QT type 3 to enroll in their research study. Their goal is to develop a cell-based test to screen for drugs that can cause sudden cardiac death. Drug-induced cardiac side effects are the most common reason for withdrawal of drugs from clinical trials, causing major setbacks to drug discovery efforts.  Ultimately, this research hopes to improve the overall safety of pharmaceuticals. For complete information, visit the SADS website.

For information on other currently enrolling studies, visit our website.
Alice, Laura, Joanne, Heidi and Adrienne

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