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SADS E-NewsletterJuly 2011
In This Issue
SADS International Conference
Awareness Alert!
Literature Review
Climb Photo Album
Advocacy Update
EP Lab Digest Features SADS
Stay Safe This Summer!
School Nurses
Enrolling Studies

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!   


Ohio Parent Conference -Columbus, OH -July 28


6th Annual Ryan Weidler Golf Tournament -Norristown, PA -Aug. 8, 2011


Tolosky Race Event -Saratoga Springs, NY -Aug. 14, 2011 


SADS Benefit Concert at the Bluebird Cafe -Aug. 18, 2011 -Nashville, TN



 SADS Medical Education Seminar -Aug. 18, 2011 -Nashville, TN 


SADS Safe Schools Month -September

Contact Adrienne to get involved today! 


SADS Medical Education Seminar -Sep. 7, 2011 -Austin, TX


SADS Medical Education Seminar -Sep. 8, 2011 -San Antonio, TX   


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


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


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

SADS Medical Education Seminar -Sep. 23, 2011 -NYC, NY


SADS Medical Education Seminar -Sep. 24, 2011 -Hartford, CT 


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


Brayden's Buddy Golf Tournament -Gilbert, AZ -Nov. 4, 2011


For information about any of these events, or for assistance planning your own special event, contact

Laura or call 800-786-7723.

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We hope you are enjoying your summer!  Here's the latest from the SADS Foundation.

Happy Family  

Ten reasons patients and families are attending SADS 5th International Conference:


  1. To learn the most cutting edge information available from world renowned experts on SADS conditions.
  2. To find out what ALL the treatment options are for SADS conditions.
  3. To meet other families with stories like yours.
  4. To visit the healing wall to pay respect to those who have passed away.
  5. To give voice to your experiences in a community that understands.
  6. To celebrate those who are living and thriving with SADS conditions.
  7. To see where the future of treating SADS is heading - and what your care might look like down the road.
  8. To be inspired by the individuals who have fought and raised money for SADS, for research, and for their communities in the most creative ways.
  9. To hear what legislative action is being done to benefit those with SADS conditions.
  10. To see what research is being done and how you can help. 

Don't forget--Registration is %50 off until September 1st!!  

September is SADS Safe Schools Month
back to school w/ crayons

It's already back-to-school season and you know what that means?  That the annual SADS Safe Schools Month is just around the corner!  We're working on new materials this year including some special CPR pieces.  In addition, we'll be sending weekly awareness alerts with updates from the campaign, tips for awareness in schools, and volunteer highlights.  You don't want to miss out on this year's SADS Safe Schools Month, sign-up for your kit today!  Contact Adrienne at or call 800-STOP-SAD to get involved in this year's SADS Safe Schools campaign.


Literature Review

The quarterly review of literature for Q2 (April-June 2011) is now available on  Moving forward this email service will be available to physicians and other medical professionals as we expand our medical education program.  If you'd like to continue receiving this quarterly review of literature, contact Christine at or call 800-STOP-SAD to join the mailing list.   


The climbers have returned from Mount Ranier with some amazing photographs.  Check out thephoto album for this year's Climb to Conquer SADS and stay tuned for more climb highlights in the next e-newsletter. 

Climb to Conquer SADS Climb 2011 -80  

Thanks to all our climbers and families for your hard work and dedication.  We could not do it without your support and you are all truly inspiring individuals!


See the 2011 Climb Photo Album


Advocacy Update: Changes to Medicare and PCIP 

The SADS Foundation joined other members of the Sudden Cardiac Arrest Coalition recently in signing a letter of support regarding the proposed changes to Medicare.  The current proposal would include a new 20% coinsurance on laboratory services, causing the Medicare beneficiary absorb more of the up-front costs related to laboratory testing.  This is especially concerning to patients who rely on clinical laboratory tests for the diagnosis and treatment decisions regarding SADS conditions. 


In other news, the Pre-Existing Condition Insurance Plan has recently been improved.  If you or a loved one has a pre-existing condition and are uninsured, this plan and the recent changes could help you tremendously. Beginning July 1, 2011 rates have been significantly reduced and eligibility has been simplified.  What does this mean?  Well, PCIP varies depending on your state of residence.  Visit to find out how your state is working with the PCIP.  You can also call the PCIP toll-free hotline at 866-717-5826. 

SADS Foundation to be Featured in EP Lab Digest
The EP Lab Digest is a publication that focuses on electrophysiology lab professionals and physicians.  It has become an educational tool as well as a forum through which professionals share information about best practices, cutting edge procedures, and other relevant information to the EP community.  The SADS Foundation will be featured in their August edition with an article describing our vision, commitment to families, healthcare providers and communities and the actions that we take to save the lives of young people.  We'll be posting the article on as soon as it becomes available electronically.

EP Lab Digest

Stay Safe This Summer!
We hope you are all having a fun and safe summer! We know many of you have concerns about what activities are safe, and what should be avoided during the summer vacation. It is always best to follow your doctor's advice, but we have included some facts and tips about one popular activity, swimming.


There are still many unanswered questions about swimming and how it can trigger an episode. Here are our recommendations for swimming safety:

  • Always swim with a buddy who knows CPR.
  • Consider carrying an AED with you to the pool or beach or make sure your pool has an AED on site
  • Make sure someone with you has a cell phone with service at all times.
  • Consult with your Dr. about your type of LQTS and water. We know that with LQTS type 1 you should be especially careful in the water.
  • If you do not let your child swim, be sure to explain why you are making that choice to keep them safe. And make sure they don't feel like they are being punished or that it is their fault. Provide alternative activities that are fun, healthy and interactive for your child in place of swimming.

You can also check out for more information on exercise and SADS conditions. If you have questions about keeping safe this summer, contact Anne at or call 800-STOP-SAD.


SADS Attends National School Nurse Conference

On July 1-2nd, the SADS Foundation exhibited at the 43rd annual National Association of School Nurses (NASN) conference in Washington, DC.  It didn't take long for us to realize how passionate, enthusiastic and eager to learn and support families in their communities that this group was!  We had fabulous booth attendance and were surprised to learn how many of the school nurses across the country had heard of cardiac channelopathies such as Long QT Syndrome and Brugada Syndrome, many of which had families in their school district living and thriving with these conditions.  We handed out informational packets and risk assessment forms and even ran short on copies of our student care plans. back to school 2 Links to our care plans and risk assessment forms for sports participation were sent last week to the list of nurses who stopped by and already we have received emails thanking us for the important information.  Several nurses have reached out to us inviting us to participate in local school nurse seminars and conferences as well.  We are excited to grow our relationship with this wonderful group of healthcare providers and look forward to working closely with them as well as their colleagues such as coaches and school administrators to bring cutting edge information and education about SADS conditions to their schools. 

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.

  • LQTS Quality of Life Study:  

    Adults ages 18 years or older with a diagnosis of Long QT Syndrome (LQTS) are wanted for participation in a study about quality of life, thoughts, feelings, and behaviors relating to medical care, and emotional and social aspects of living with LQTS. Participation is ANONYMOUS. Participants will receive a $10 gift card to a national retail store when questionnaires are returned. This study is led by Stephanie Felgoise, Ph.D., ABPP at the Philadelphia College of Osteopathic Medicine (PCOM).     

  • Northern California Women with ICDs:

    Women ages 18 to 40 are needed to participate in a confidential study exploring the experiences of young women with an ICD. Participants will share their ICD story and contribute to a better understanding of the female ICD experience, which helps health care providers better meet your needs. Upon study completion, participants will receive a $15 gift card. Researcher is Erin McKnew, M.A. at the Wright Institute in Berkley.

  • Diagnosing LQTS in Utero:

    Bettina Cuneo, M.D., The Heart Institute for Children and Advocate Health Care in Chicago, IL is heading a fantastic study to increase our knowledge of the heart before birth. They can now diagnose LQTS before birth using a non-invasive test, called a magnetocardiogram that presents no danger to the mother or fetus; it does not use radiation like CT scans or x-rays. The optimal time is at 22-26 weeks of gestation.


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