E-newsletter Mar 2012

Here's the latest news from the SADS Foundation!

How Tracing One Family Tree Has Saved Over 150 Lives 


The SADS Foundation all began because of one family and one committed doctor. The Christensen family, and the diagnosis of a set of triplets after two suffered sudden cardiac arrest led Dr. G. Michael Vincent to research and analyze LQTS. He discovered it has genetic causes and, with the cooperation and dedication of the mother of the triplets, Merle Christensen, the family line was traced for generations. This resulted ultimately in the diagnosis and treatment of over 150 family members in the Christensen line who have LQTS. Over 2,000 family members were evaluated; making it the most comprehensive family pedigree ever done on a family with LQTS. Out of this family history 12 family members were determined to have died from LQTS. However once a family member was found, screened and treated, (out of those who complied with prescribed medication) none had a sudden death.

Tracing your family medical history is a critical step once you have been diagnosed and treated for a SADS condition. In honor of Merle and Women's History Month, we are offering a free Family History Kit with a Pedigree Tree to trace your history. Click here to learn more, or contact Anne Maurer at 1-800-STOP-SAD.   


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Anniversary Greetings Continue!   


This month the SADS 20th Anniversary Video is from Dr. Susan Etheridge who now sees the same patients who saw Dr. Vincent when he discovered LQTS was being carried in the Christensen line. Click here to check out the video and see what else has been going on for our 20th anniversary!!  


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Join SADS Volunteers in Long Island, NY


SADS Foundation volunteer, Bob Timm, has reserved a table for SADS at the upcoming South Huntington Union Free School District's annual Health Fair on Thursday March 29th.  If you're in the area and can join Bob, please contact Adrienne Butterwick or call 800-STOP-SAD.  

New Research Study Enrolling Clinicians

Expert clinicians in treating persons with LQTS are needed for a research study examining physician's decision making regarding medical and behavioral treatment recommendations for LQTS patients. Participation requires a one hour phone, Skype, or in-person interview (if in the greater Philadelphia region). All participant's identifying information will be remain confidential.

family support
SADS Foundation 6th International Conference

The SADS 6th International Conference offers the unique experience of meeting fellow families as well as posing questions to some of the world's leading experts in SADS conditions.  Thanks to the wonderful feedback we received after the last conference, we have taken special care to include sufficient time to get your questions answered and hear about other families' experiences as well.  Be sure to join us for the SADS Foundation's 6th International Conference in Salt Lake City, Utah on October 12-14, 2012.
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Scentsy Fundraiser

Help support the SADS Foundation by ordering the products you already love from Scentsy! Amanda Davis of Radnor, Ohio has two sons who have been diagnosed with LQTS and is raising funds for the SADS Foundation with Scentsy.  Be sure to take advantage of this special offer before the end of March!
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Quilt Opportunity Drawing

Maureen Schulman of Shrub Oak, NY and the Northern Star Quilters Guild have generously donated this beautiful quilt to raise funds for the SADS Foundation.  Tickets are currently available and the drawing will take place on May 6th.

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Deadline Approaching

The SADS Foundation's Courts K. Cleveland, Jr. Young Investigator Awards in Cardiac Channelopathy Research will recognize two outstanding, original academic works in the field of cardiac channelopathies (Basic Science category and Translational/Clinical Science category), which have not been published prior to the Heart Rhythm Society annual meeting, and/or presented in the prior year by a junior investigator. Applications must be submitted by April 5, 2012.

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Where's Bob 2012 Season

Bob Devries of "Where's Bob?" will be traveling to baseball games across the country again this year raising awareness and funds for the SADS Foundation.  Be sure to check out the season line-up for a game in your city! His first stop is St. Louis to see the Cardinals take on the Cubs on April 14th, 2012.


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Coming Events:
American College of Cardiology: March 24-27, 2012
Where's Bob? Season Opener in St. Louis, MO: April 14, 2012
Chicago Medical Education Seminar: April 20, 2012 
Heart Rhythm Society Annual Conference: May 9-12, 2012
Heart & Soul Benefit Concert (In Memory of Sabrina Keller): May 19, 2012 National EMS Week: May 20 - 26 , 2012
Spring Lake 5 Marathon: May 26, 2012 
Where's Bob? Rays vs. Orioles: August 5, 2012