SADS 20th Anniversary Logo
 
Greetings!
SADS Safe Schools: Order Your Awareness Kit Today!
 
As the 2012 summer is wrapping up, it is time for the SADS Foundation to make another shout out to all our volunteers because SADS Safe School is rolling in!  Our efforts for this cause would be futile without our dedicated volunteers and the generous support given to us by all the school health personnel. We need all of your help to make this year's campaign another successful one!

Here's three easy steps to getting involved:
  1. Go to the SADS website and order your SADS Safe School kit.   
  2. Ensure your child has a care plan in place and then take the materials to your local schools. 
  3. Keep in touch with us to get the latest volunteer reports and news.
Don't you worry, we will be with you every step of the way!  In the coming weeks, a section of the SADS website will open up volunteer forums and material support systems to help you navigate through all the information. Stay tuned for details!

Also check us out on You Tube for our first volunteer video and tune in for weekly updates in September. We are excited to work with you all for an amazing SADS Safe School Campaign!


New Program Unveiled at the SADS 6th International Conference!
 
We are proud to announce the new SADS Ambassador Program at the SADS Foundation 6th International Conference in Salt Lake City, UT this October 12-14. This innovative program will provide all the training and skills necessary for you to bump up your volunteer potential. Designed for the SADS volunteer who wants to make lasting change, we will provide in-depth training on providing Family Support, Awareness, Fundraising and Advocacy for the SADS Foundation in your community and the nation! Please join us by signing up here, and come prepared to be inspired! 
Zofran Safety Alert

As you may already have heard, the FDA informed healthcare professionals and the public that preliminary results from a recently completed clinical study suggest that a 32 mg single intravenous dose of ondansetron (Zofran, ondansetron hydrochloride, and generics) may prolong the QT interval which could pre-dispose patients to develop Torsades de Pointes.

Though the new information on QT prolongation does not change any of the recommended oral dosing regimens for ondansetron, we recommend reviewing the following paper from the New England Journal of Medicine, which suggests there may be risks involved with the oral use of ondansetron. Ray WA, Murray KT, et al. Azithromycin and the risk of cardiovascular death. NEJM 2012 May 17;366(20):1881-90.

Ondansetron (Zofran) is already included on the Drugs to Avoid list for people diagnosed with Long QT Syndrome. 
Learn More...
Poster entry submitted by the McArthur family of Abilene, TX.
SADSConnect Youth Poster Contest!
Get your child involved and submit a poster! 

The poster theme is "Did you know kids with SADS can do this?"  And we need your great ideas. The winner of the contest will have their artwork turned into an actual SADS Foundation poster that will go to schools all over the country, and they will also be awarded a gift card!




The winner will be announced at the SADS 6th International Conference in Salt Lake City, October 12, 13, 14. (you don't have to be present to win!)

Learn More...

SADS 6th International Conference: Salt Lake City, UT October 12-14, 2012

On October 12, 13, and 14 the SADS Foundation will host the 6th International Conference in Salt Lake City, Utah: Preventing Sudden Unexpected Death in the Young.  Your child will benefit from meeting other kids and siblings at the SADS Connect Youth Track.  The agenda is packed with fun activities, educational sessions and plenty of time for making lasting friendships. 


 Learn More...
Research: Personalized Medicine on the Horizon

A major breakthrough in the application of clinical genetics to clinical practice came shortly after the discovery of the genes for the 3 most prevalent variants of the disease (ie, LQT1, LQT2, and LQT3) when Moss and colleagues identified the remarkably distinctive shape in each of the genetic variants of LQTS. This study generated the view that LQTS is not 1 disease but rather represents a group of pathologies characterized by prolongation of cardiac repolarization that are caused by different genes and therefore should be regarded as distinct entities. The publication of this seminal article stimulated the search for genotype-phenotype correlations that dominated the field for the subsequent 15 years. 

Priori SG, Napolitano C.

Circulation. 2012 Apr 24;125(16):1961-3. Epub 2012 Mar 28.  


 More From the Q2 Literature Review...
Insurance Coverage for SADS Patients and Families

This important study hopes to make health, life and travel insurance coverage more accessible for everyone.
 
Flat Bob visits South Africa with the Metoyer Family


Flat Bob Around the World!

Where are you taking your Flat Bob this summer?  Send us your photos of Flat Bob on vacation with you and be sure to check out the latest photos at www.StopSADS.org!

 
The Affordable Care Act:
A Consumer's Guide

Kaiser Health News recently published a consumer's guide to some of the law's provisions that are already up and running as well as major features of what's to come surrounding the Affordable Care Act.  
 
Sports Guidelines for LQTS Patients: Too Strict?

In light of the news surrounding Olympic swimmer, Dana Vollmer, and her Long QT syndrome diagnosis the Mayo Clinic issued a press release regarding sports guidelines.  Physicians have long debated the issue of LQTS patients participating in competitive sports which has led the Mayo Clinic's LQTS clinic to evaluate its own experiences with the issue.  In a record-breaking study published July 24th, 2012, 353 LQTS patients ages 6 to 40 were asked about their participation in athletics after diagnosis.  The results, published in the Journal of the American Medical Association suggest that the existing guidelines may be excessively restrictive.  However, it is advised that LQTS patients who want to remain athletes should seek treatment from a known expert in the field of channelopathies.

 Learn More...
Kristen Hether & Family

A Moving Story

Recently, staff members at the SADS Foundation have been deeply moved by this amazing story, so we thought we'd share it with all of you!

Kristen Hether, a young and happy newly wed in 1996 was your average citizen, with a subscription to Reader's Digest magazine.  "I remember being fascinated by the article highlighting Dr. Michael Vincent and his discoveries concerning a condition called Long QT Syndrome. Interestingly enough, just a month after reading that article, I was working at a doctor's office and my co-worker needed a test subject to try out the new ECG machine we had obtained for the office. The results showed a prolonged QT."   After seeing several physicians, her strange ECG was dismissed.  Nearly 15 years later, Kristen suffered a cardiac arrest at home.  Luckily her daughter was there and acted quickly to get Kristen to safety.  After a series of more tests and doctor's visits, Kristen finally learned she had a genetic heart condition known as LQTS.  Shortly after, she received an implanted cardio defibrillator (ICD). "I now have an ICD which has defibrillated one time since I received it a year ago. Through my diagnosis, my sister has received an ICD and I have learned that many family members are affected by this condition." 

The real "goosebump" moment is when Kristen and her family got to meet Dr. Michael Vincent at the SADS Foundation's 5th International conference, last October.  Kristen and her family have become great advocates in their community for SADS!
Next "Ask the Expert" Video Published!

Dr. Michael Ackerman, MD, PhD, answer's this month's question: "Is Swimming a Trigger for a Long QT Syndrome Episode?"

Click to submit a question and see previous videos
 
SADS Connect E-newsletter

We recently sent out the first edition of the SADS Connect for Youth E-Newsletter.  This e-newsletter is filled with information just for kids with SADS and their siblings.  Be sure to sign up for the next one coming out next month! 

Click here to sign up
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