Climb to Conquer SADS
July 9, 2008

From Our Current Newsletter
Tom Sutch movie about LQTS
Insurance Tips
New Guidelines

Risk Assessment Form
This form should be used by physicians, coaches, parents-- for all kids.

  To see past newsletters and family stories, click here

My Child May Have SADS
If you are visiting our website for the first time and think you may have a SADS condition, you may find some help here..

Advocacy: GINA Passed!

The Genetic Information Nondiscrimination Act (GINA) pased unanimously in the senate this afternoon! Thanks to all of the great SADS families who helped us advocate for GINA's success.

SADS Press Release

For more information on GINA and the Senate vote...

Blue Cross Issues Genetic Testing Review

Read the full analysis by Blue Cross on genetic testing as preventative treatment here.

Advocacy: NIH Budget Increase In the Senate

Good Morning America Segment: “Lifesaving Test Held Up By Paperwork”

A 4-year-old boy, a potentially life-threatening disease, and a genetic test that would provide vital information to combat Sudden Cardiac Death. CJ Lafortune unfortunately, has met with the same hardships that so many of our SADS volunteers have encountered with regard to diagnosis, insurance coverage, and appropriate treatment. However, this young boy is fortunate in three regards: he survived a cardiac arrest, was diagnosed with Long QT Syndrome early, and is now enjoying the benefits of coverage for his genetic testing—thanks to a few friends at Good Morning America.

For more on this story...

Run with Medtronic, Give to SADS

Medtronic is now recruiting runners from
around the world who benefit from medical device technology (those who run with an ICD) to participate in the third annual Medtronic Global Heroes program and to run in the 27th Annual Medtronic Twin Cities Marathon or the Medtronic TC 10 Mile. The Marathon weekend will take place Oct. 3-5, 2008 in Minneapolis and St.Paul. Medtronic will donate $1,000 to SADS per runner involved in the marathon. Last year there were three participants who ran for SADS: Courtney Sprissler, Erin McGann, and James Todd.

Learn more...

New movie dedicated in memory of SADS victim.

Molly Smith, producer of the new movie PS, I Love You, has dedicated the film to the memory of her sister Windland Smith Rice who passed away due to previously undetected Long QT Type 2. eBay has auctioned off a trip to Ireland along with some items from the film and proceeds from the auction are going to SADS.

Learn more about the Smith family's experience here.

ICD Alert: Recall Notice 10/15/07
Medtronic is voluntarily recalling its Sprint Fidelis ICD leads & asking physicians not to implant them from this point on. FDA information and Medtronic information for patients and physicians.