The SADS Foundation congratulates Rebecca Knowles and her family for getting Heart Safe School Accreditation up and running in upstate New York! Their story has been receiving a lot of media attention recently (see here for an article explaining her family's story). Because October is Sudden Cardiac Arrest (SCA) Awareness Month, we challenge you to raise SCA awareness in your schools and make sure they offer CPR training in school.

Does your school offer CPR training to kids? If so, let us know by emailing Jenny at jenny@sads.org with the name of the school, the city and the state. If your school doesn't offer CPR training for kids, urge them to consider adding this to the curriculum. The Heart Safe School Accreditation program (which you can learn about here) includes 7 elements necessary to make your school heart safe. We also have a free program (HOPE) for training hands-only CPR. Finally, you can watch videos and get more information about CPR here.

Help us raise awareness this October, and keep us updated on what you're up to!

  

Staff members have recently received a number of questions and requests for more information on how to transition into a college environment with a SADS condition, and we need your help. We're going to be putting together materials specific to navigating college life with SADS, and figured it would be best to go right to the source of time-tested, "front line-informed" strategies: YOU! To that end, we've generated a series of questions and we're looking for your input.

• What have you (and/or your teen) done in the past to prepare for college? What worked? Be as specific as you can.
• Who were the folks you informed first, and how? What would have helped in that circumstance?
• What changes to your daily routine were needed to ensure your safety (if any)?
• What three things did you learn that you wish you'd known before going to college so that you could be prepared?

Please send answers to the following questions to Matt at matt@sads.org! Oh, and please use the title "College Questions" in the subject line!

Heart Safe School Accreditation Survey Results

The first Heart Safe School Accreditation survey results are in! The survey was completed by all schools who have received Heart Safe School Accreditation. Look for a PowerPoint of complete results to be posted on the Heart Safe School Accreditation website soon!

• 31% of schools learned of new students at risk of sudden cardiac arrest.
• 70% of schools made changes to individualized care plans. 
• 61% of schools added AEDs to their building(s).
• Confidence in staff to perform CPR and use an AED increased over 50%.
• 100% of school reported an increased awareness of sudden cardiac arrest.
• 100% of schools would recommend the program to other schools.

Join the craze and get your school accredited as a Heart Safe School today!

Contact Jenny Hoggard at jenny@sads.org or 1-800-STOP-SAD to find out how to get your school accredited or visit our website at www.StopSADS.org/hssa for more information

 

Events! Events! Events!

 

We at the SADS Foundation are incredibly fortunate to be blessed with families who kindheartedly give to us through volunteer fundraising events that help make it possible for us to continue our mission to support families and save lives of young people with SADS conditions.

During the past weeks, several events have been held throughout the United States. Each one has been uniquely inspired and delivered both awareness of SADS and an enjoyable and entertaining time. Our most heartfelt appreciation is extended to the following volunteers and their events:

Nancy Walker and Jan Schiller

August 14 - Chicago, IL - Microsoft Incubation Annual Kick-Off with Nancy Walker
Each year the Microsoft Incubation Team holds an annual kick-off meeting that includes a fund-raising event. Nancy Walker nominated the SADS Foundation to be this year's recipient and we were honored to be selected. The evening included an extremely entertaining lip sync competition where votes were pledges to the SADS Foundation. Microsoft also matches any pledges that are made making this a doubly giving event. Many thanks!

The Manelis Family

August 24 - Rochester, NY - Heartbeat for Scarlett Walk and Family Fun Day with the Manelis Family and friends
The Manelis family partnered with Penfield Girls Varsity Soccer Team to host the first annual Heartbeat for Scarlett Walk and Family Fun Day in honor of their preschooler Scarlett who has Long QT and suffered a brain injury during a cardiac arrest. This special event was enjoyed by all and greatly exceeded their original expectations. Next year is certain to be even better. Well done!

Left to Right: Diane Kazan, Dr. Ackerman, Scott Dailard, Alice Lara, and Kyle Kazan at A Night Under the Stars

September 13 - Palos Verdes Peninsula, CA -  A Night Under the Stars
with Kyle and Diane Kazan 
The first annual A Night Under the Stars was hosted by Kyle and Diane Kazan whose son was misdiagnosed with Long QT. The evening honored the Del Rosario family who lost their son Ultimate Fight Champion Shane Del Rosario, and the Paul family whose son Justin was diagnosed with and treated for Long QT and is now thriving. Nicola Persky made three videos telling the stories of misdiagnosis, an early death, and success living with SADS conditions. We were fortunate to have Dr. Michael Ackerman attend as a featured speaker. Our thanks for a wonderful event at a wonderful venue!

2014 Climbers

September 14 - Scotchman's Peak, ID - Climb to Conquer SADS
with Dr. Chris Anderson and friends
The last Climb to Conquer SADS led by  Dr. Chris Anderson took place this year. Since 2007, climbers have taken flags in memory of or in honor of SADS family members to the top of eight difficult peaks and raised nearly $150,000!
Thank you SADS Foundation Board Member Dr. Chris Anderson for launching and leading this amazing event for eight years! Climb on with our thanks!

Bill and Sally Layton

September 20 - Colorado Springs, CO - Oktoberfest with Bill and Sally Layton and gang
Longest-running event Oktoberfest hosted each year since 2003 by the Layton Family in honor of Sally Layton has featured brats, sauerkraut, local beer, local music, amazing silent and live auctions items, and fun German traditions raising more than $160,000! Thanks so much!  Prosit! (Cheers in German).














Please contact Director of Development and Marketing, Jan Schiller at 801-531-0937 or Jan@sads.org for information abut doing your own event.

As a member of the interim steering committee of the Health eHeart Alliance, we here at the SADS Foundation wanted to let you know about an opportunity to be a part of an upcoming Patient-Centered research summit, to be held in San Francisco this November 6th and 7th. The summit will provide an opportunity for individuals/patients to assist in the development of key research ideas that will provide direction for future programs of research on heart conditions.