SADS 20th Anniversary Logo









  September 2013

SADS Safe Schools Month: Updated Care Plans.
Join Our Efforts Today! 


The 2013 SADS Safe School Campaign is wrapping up for the year! But this does not mean the end to keeping your kids safe at school. You can continue to submit kit and material requests

on our website

 

UPDATE:

We recently made updates to the Emergency Response section of our care plans that will affect all SADS material requests placed prior to August 30, 2013. You can see the new care plans here. We will be sending out the updated care plans to all those who requested materials. We apologize for any inconvenience!

 

We have made great progress around the country with this campaign and are grateful for the support we have received. During this campaign we have sent out 239 awareness kits to families and health professionals from almost every state.

 

Remember, it is not too late to order your kit and raise awareness in your own community. SADS Safe Schools month may have come to a close, but we can continue to keep our kids safe in schools by sharing these valuable resources!

Click Here to Register Now!
 
Healing Garden at the SADS Foundation's International Conference 2013

This year we are honored to present a healing garden of beautiful quilted flowers that can be personalized in memory or in honor of a loved one with a SADS condition. This beautiful memorial will be created on the spot throughout this year's conference. We also will have our Healing Wall on display. If you would like to submit a photo and story of your loved one to be displayed throughout the 2013 conference, please send your photo and story to Anne Maurer. We also ask for a donation of $10 to cover the costs of materials for the photo and frame. 

 

For more information about the Healing Garden and the SADS Conference, click here.

 

Congratulations to SADS Young Investigator, David Aurbach!

 

David Auerbach, Ph.D., University of Michigan, receives the Courts K. Cleveland SADS Foundation Young Investigator Award in Cardiac Channelopathies from his mentor Lori L. Isom, Ph.D.  The SADS Foundation is proud to recognize David's basic research at the Isom Laboratory - Neurobiology of Inherited Disease.

 

SADS 20th Anniversary Logo

Get a Copy of the 2012 Conference DVD

 

Price Reduced! The 2012 Conference DVD is now available for $25.00. This informative DVD contains the best lectures from the 2012 conference. Order yours today to prepare for this year's conference! Click here to order. 

 

Send Us Your Stories!


Send us your stories! We are looking for inspiring and heart-warming stories about our members. Has your child with CPVT done something you are really proud of? Has your family held a recent fundraiser- and you want to see your pictures in print? Do you want to share a story with the SADS community about your struggles or triumphs? Please feel free to send us these stories and we will print them in our e-news, use them on our website, and share them in our newsletters. E-mail us today!

Updates Made to QTdrugs List 

9/17/2013

 CredibleMeds

Added to "Possible risk of torsades de pointes":

  • Norfloxacin (Noroxin� or Ambigram�), a drug for the treatment of bacterial infections, has been added to the list of drugs with "Possible risk of torsades de pointes".
 

Added to "Risk of torsades de pointes".

  • Anagrelide (Agrylin� or Xagrid�), a drug for the treatment of thrombocythemia (excess platelets in blood), has been added to the list of drugs with "Risk of torsades de pointes".

 

For patients with congenital long QT syndrome (CLQTS), we recommend that, unless no other option is feasible, drugs on any of the QTdrugs lists should be avoided.

 

AZCERT.org is now CredibleMedsTM

Heart Safe Schools Accreditation

 

The Heart Safe School Accreditation project is gaining momentum and we couldn't be more thrilled! Together with Fairfield Medical Center's SNIDER Cardiovascular Institute and the SNIDER Community Heart Watch, the SADS Foundation is proud to announce that in addition to our first accredited school, West Elementary School, the following schools have joined the growing list by achieving their Heart Safe School accreditation: Harmon Middle School, Violet Elementary School, Pickerington Elementary School and Thomas Ewing Junior High School. Thank you to each of these schools for their dedication towards protecting students in the case of a medical emergency!  Way to go everyone!

 

The Heart Safe School Accreditation was designed in a manner so that it is achievable, yet provides the necessary measure to improve safety at our schools. We hope to have many schools and districts to thank and congratulate in the coming year!

Get Your Copy of "Savvy Stories" Today - A Heartfelt Tale of a Dad and His Daughter

 

"Savvy Stories" is a newly-released e-Book about the many lost, magical moments of childhood, viewed through the heart of a father.

 

The main character of the book is Savannah (nicknamed "Savvy"), a little girl who was diagnosed with Long QT Syndrome at birth. Her father also has LQTS but has been asymptomatic his entire life.

 

"Savvy Stories" covers her life, from the delivery room, to getting diagnosed with Long QT and spending a scary week in the hospital NICU, to learning to walk and talk and do all the other things that little kids do. Unlike most stories about fatal illnesses, Savvy Stories maintains a positive, life-affirming outlook, and finds humor in just about any situation. Even some where the easier option is insanity. It is a humorous book that happens to be about two people with a potentially fatal heart condition. While LQTS is not always in the forefront of the book, it is always in the background. For example, when Savvy goes to grandma's, the backpack she takes contains her AED and beta blockers.

 

We'd like to thank Dan Alatorre, the author of this wonderful book for his support and efforts to raise

awareness for SADS conditions.

 

Where to purchase your copy of "Savvy Stories":

For Amazon Kindle  click here.

For apple, Sony, and other eReaders  click here.

 

Savvy Stories is coming soon to Kobo, and will be available in paperback before Christmas.

 

IN OUR GENES

Living with Inherited Heart Disease

 

DNA Magnifier

Dr. Euan Ashley and the team at the Stanford Center for

Inherited Cardiovascular Disease, would like to invite you

to join us for a day of community and learning, focusing on issues surrounding living with an inherited heart condition.

 

SATURDAY, SEPTEMBER 21, 2013

8:00AM-5:00PM

Quadrus Conference Center

2400 Sand Hill Road Menlo Park, CA 94025

Free parking. Breakfast and lunch provided.

This event is organized in a unique way, offering three educational tracks: Living With, At Risk and Caring For. During the conference, please visit "The Wellness and Resource" and "The Research and Testing" rooms for an opportunity to talk with members of the Stanford team and to connect with community advocates.

 

REGISTRATION

To RSVP visit click here. The fee is $25 per person. Registration fee paid online through PayPal. Scholarships available. For more information contact: Yael Shmargad at shmargad@stanford.edu or call 650.725.6911.

 

Who should attend?

Any person interested in or affected by inherited heart diseases such as, hypertrophic cardiomyopathy, dilated cardiomyopathy, arrhythmogenic right ventricular cardiomyopathy, left ventricular non-compaction, familial hypercholesterolemia, marfan's syndrome, neuromuscular dystrophies, long QT syndrome, atrial fibrillation, Brugada syndrome, ventricular tachycardia,

sudden cardiac arrest.

 

For more info on topics and speakers, check out the agenda . 

7th Annual Climb to Conquer SADS
 

 

 

On Sunday, September 15, at 8:45 p.m., a team of ten climbers began the five-mile hike to the summit of Mt St Helens to raise money and awareness for the SADS Foundation. Led by Chris Anderson and seasoned mountaineers Roland Lamarche and Mark Stambaugh, all ten climbers reached the summit of this magnificent volcano while carrying the banners of four families affected by SADS conditions.

 

 

Reaching the summit of Mt. St. Helens at about 2 p.m., everyone exchanged hugs and handshakes, snapped several photos, and brought out the banners. Carrying these banners of families who have had such an impact on their lives, and lost loved ones due to SADS conditions, is certainly one of the most touching aspects of this special event. As it was quite windy up there, everyone kept an iron grip on those banners as we snapped the photos with the banners.

 

 

Climbers spent a good long while enjoying the companionship and unexpectedly good weather. Then after a shorter descent than ascent, everyone arrived back at the cars at about 4:45 p.m., making this an eight-hour hike. "A great time was had by all, and it was a pleasure and a privilege to climb with all of these wonderful people and raise money and awareness for SADS!" says Chris Anderson, Climb Organizer and SADS Foundation Board Member.

 

 

 

 

Thank you to all those who participated in this event!

 

 



September 21
Oktoberfest
Colorado Springs, CO 
Upcoming Events
    
September 21
Living With Inherited
Heart Disease- Conference
Menlo Park, CA

 

  



September 29
Heartoberfest
Saratoga Springs, NY 

November 1-3
7th International Conference
Columbus, OH

November 3

Long QT Benefit and 

Awareness Acoustic Concert

Philadelphia, PA

November 30
Brittany's Trees
Carol Stream, IL



Sincerely, 

The SADS Foundation

Alice, Anne, Carol, Sylvie, Christine, Jan, Rachel, Sarah, Grace, David and Brandon

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