New SADS Logo
SADS E-NewsletterJune 2011
In This Issue
SADS International Conference
New Director of Family Support
Enrolling Studies
Advocacy Update
Climb & Family Match-Up!

New! SADS Medical E-Newsletter 


Pass it on!

Upcoming Events    


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

50% off registration now through September 1st!   


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


Climb to Conquer SADS Celebration Party -July 17, 2-11 -Spokane, WA


Ohio Parent Conference -Columbus, OH -July 28


SADS Benefit Concert at the Bluebird Cafe -August 18 -Nashville, TN


SADS Safe Schools Month -September


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


6th Annual Christie's Heartoberfest -Ballston Lake, NY -Sep. 17, 2011


14th Annual Layton Oktoberfest -Colorado Springs, CO -Sep. 17, 2011


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


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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Happy 4th of July from the SADS Foundation!


Have you ever wished you could have a room filled with the nation's leading experts in SADS conditions? Well, here's your chance!  The SADS 5th International Conference brings together the largest group of experts representing a wide variety of professions including physicians, researchers, genetic counselors, nurses, etc. We know there will be some great discussions between these professionals and patient-families. It's your chance to meet the experts, share your experiences with other families, and gain valuable knowledge about living and thriving with a SADS condition.



Did we mention we have fun activities planned for the kids track? Some wonderful individuals who attended as kids are returning as adults, ready to help children with questions and share their experiences growing up with a SADS condition.


Kids will be making videos, learning all about the heart, learning CPR/AED activities, and even making their own SADS team member T-shirts! Your child will create lasting friendships at this fun and interactive conference track.    


Registration is %50 off until September-- register for the conference today! 

SADS Welcomes New Director of Family Support


We're more than excited to introduce you to our new Director of Family Support, Anne Maurer. Anne graduated from the University of Seattle with a Masters degree in Existential-Phenomenological Psychology. 

Anne Maurer

She is a licensed counselor with a mental health background, focused on grief, loss and trauma, especially in children and families.  She makes a wonderful addition to the SADS team and has already began helping families.  We encourage you to reach out to her whether you need assistance or just to say hello!  You'll all have the pleasure of meeting her at this year's

International Conference. Email Anne 


Enrolling Studies

Here are a few studies that are currently seeking SADS patients, if you have any questions about participating in research or any of these studies please feel free to contact Anne at or call 800-STOP-SAD.
  • Northern California Women with ICDs

    Residents of Northern California are needed to participate in a confidential study exploring the experiences of young women with an ICD 

  • LQTS Quality of Life Study 

    Adults ages 18 years or older with a diagnosis of Long QT Syndrome (LQTS) are needed for participation in a study of quality of life.


Last week was Genetic Alliance's annual Genetics Day on the Hill.  Advocates met with representatives to discuss three major issues: support funding for the CDC Programs for Birth Defects, Disabilities, and Public Health, commit funding for Title V Maternal and Child Health Block Grants, and support the newly formed National Center for Advancing Translational Sciences (NCATS).  The SADS Foundation especially supports the NCATS in that the time and resources required for new medications to become available is simply unacceptable for patients with rare conditions and we hope to greatly improve this process with the formation of this center. 


SCAC LogoDid you take action already? 

It's not too late to contact your representative to preserve funding for Rural and Community Access to Emergency Devices Program.  Click here to read the action alert and get involved today.


In other news, Congresswoman Lois Capps is working on a bill "Teaching Children to Save Lives Act of 2011" that would ensure all students receive CPR/AED training prior to graduation.  We're excited about this bill as it encourages collaboration between both public health and education agencies, a recipe that's bound to succeed.  We'll be sure to keep you posted on this bill as well as other legislation as the session continues.


Next week (Thursday, July 7th) our climbers will carry their family flags to the top of Mount Rainer.  Take a peek at the family flags and meet their climber matches.  

Climb to Conquer SADS Climb 2010-Brian Hoots 

Then stay tuned on Facebook and Twitter to see photos

and updates! 



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