|Take the latest SADS Quick Poll about AEDs|
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
Sponsor a climber today!
Click here for more information.
|Follow us now
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.
They 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
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
|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 LivesA 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
compared to 24 percent when an AED was applied before EMS arrival, and
percent when an AED shock was delivered before EMS arrival. Use of an
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
| 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
508 East South Temple, Suite 202
Salt Lake City, UT 84102