SADS Foundation
February 2009 Issue No. 2
SADS Foundation

Leading the Way to Save Lives

The Sudden Arrhythmia Death Syndromes (SADS) Foundation is a leader in education, research and advocacy for families and individuals at risk for cardiac arrhythmias that can cause sudden death in young people.



I hope your year is starting our with a bang like ours is. Our meeting in New York City was a wonderful success and we're planning a few more meetings like it in the future. We also have many support groups forming around the country--including in NYC. Check our website frequently for one in your area:

Federal Stimulus Package Increases NIH Funding for Research
The stimulus package includes an historic victory for the health of Americans and an important step towards President Obama's pledge to double science funding over the next ten years. We have secured a significant funding increase of $10 billion for the National Institutes of Health. We thank the Congress and the Administration for recognizing that NIH funding can help cure the economy as well as disease.
Genetic Testing and Blue Cross Insurance
PGx Health and Blue Cross Blue Shield have entered into a partnership that will make Familion testing more accessible to the millions of BCBS members across the country. The agreement with the Blue Cross and Blue Shield Association is to offer its genetic tests for inherited cardiac syndromes to BCBSA member companies. The agreement will give BCBSA's 39 member companies access to the Familion Long QT Syndrome test. The individual insurers will be able to independently enter into an ancillary contract to offer the tests to their members.
Insurance Appeals
Have you successfully appealed a high co-pay or denial from your insurance for coverage of: genetic testing, an AED, an ICD, or a physician specialist for LQTS, Brugada, CPVT, ARVD, etc.? If so, you can help other families by:

  1. providing SADS with a copy of your appeal that we can use as an example (we will delete any identifying information)
  2. be willing to talk with other families about the appeal process. We are collecting appeals so we can have a "library" of appeals to different carriers.
Mail or fax copies to: Joanne Robinson, 508 South Temple, Ste 20, Salt Lake City, Utah 84102; FAX 1-801-531-0945. If you have any questions or comments contact Joanne at 1-800-786-7723 or

Tips for Dealing with Insurance Claims from our Website

Come find us on Facebook! 
We just launched the 'official' SADS Facebook page:  Just type SADS Foundation into the Find Causes, Browse Causes space and we will be there.  Please post pictures, stories, and invite your friends to join us. 

Join SADS Facebook Page

Be sure to get help for your family pedigree from Joanne!


Alice Lara

SADS Foundation
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SADS Foundation | 508 E. South Temple, Suite 20 | Salt Lake City | UT | 84102