We want your feedback for the conference!

For those of you who were able to attend the 6th SADS Foundation International Conference in Salt Lake City, Utah, our SADS Foundation board of directors and staff we want to thank you for attending our wonderful event! It was a pleasure to meet you all and we hope you enjoyed your time with us in Salt Lake City.

Please take a minute to fill out this short survey to provide valuable feedback on how to make SADS events even more successful in the years to come.

https://www.surveymonkey.com/s/F53FB3C

And for future conferences, mark your calendars now!

The 2013 SADS Foundation’s 7th International Conference will take place next October in Columbus, Ohio! We look forward to seeing you soon!

If you have any questions, please do not hesitate to let us know. For more information on the SADS Foundation or how you can help out, please visit us at www.StopSADS.org or you may call us at 801.531.0937

15th Annual Hanss Oktoberfest!

For all those who live in Colorado, please come out and join us for our fabulous 15th Annual Hanss Oktoberfest! Feel free to wear ethnic clothing to add to the celebratory atmosphere. There will be a silent auction and raffle, and all you can eat Brats, German potato salads, German pretzels, and rolls and Sauerkraut! All proceeds go to benefit the SADS Foundation.

 
Date: Saturday, September 15th, 2012

Time: 4 pm

Place: 3225 Brenner Place, Colorado Springs, CO

 

For more information on the SADS Foundation, please visit http://www.StopSADS.org or call us at 1-801-531-0937.

SADS Safe Schools Video #1

September is approaching fast and the SADS Foundation wants to make sure that YOUR school is a SADS Safe School! Take a minute and learn how you can help with our first video featuring our own Development Director Laura Wall and Flat Bob!

Come be a part of the SADS Foundation’s “SADS Safe School” video submissions! You can record your video with any digital electronic you have (phone, computer, camera, iPads…etc). Please share your unique story by answering the following questions:

1. Why I like being a part of the SADS Safe School Campaign/ Why I like to volunteer with SADS?

2. What benefits I feel from volunteering / any special story I have while working with SADS?

3. Why others need to join us in spreading the word?

Flat Bob can even make a cameo in your video, the more the merrier!

Please submit a 1-3 minute video. There are several methods to make sure your video gets to us. To record and submit your video via facebook message, go to http://www.facebook.com/pages/SADS-Sudden-Arrhythmia-Death-Syndromes-Foundation/194665999753 then click “Message” on the right hand corner. Type a short description and click the camera shaped icon to record your video. After you are done, simply click send, and your video will be on its way to us.

If you choose to record your video through YouTube, send us the link via facebook message. You can also email us your video in mp3 format at carol@sads.org.

Thanks you so much for your support!

National Institutes of Health Research Database

The Sudden Arrhythmia Death Syndromes (SADS) Foundation has been selected by the National Institutes of Health (NIH) to participate in a ground-breaking, two-year pilot study to collect de-identified patient clinical information for clinical research of rare diseases.

The SADS Foundation is an organization dedicated to saving lives and supporting families of children and young adults who are predisposed to sudden death due to heart abnormalities. The Foundation provides information, support and hope to thousands of families with children living with the health threat and is a leader in education, research and advocacy for people with genetic heart arrhythmias that can cause sudden deaths.

This pilot program is to establish a Global Rare Diseases Patient Registry and Data Repository (GRDR) as a shared and trusted resource for patient natural history information to accelerate research and provide information for advocacy groups. The goal of GRDR is to enable analyses of data across many rare diseases, including SADS conditions, to facilitate clinical trials and other studies. This registry database ultimately creates a structured system for patients and their personal data and medical information.

For more information on the GRDR, please visit www.grdr.info. For more information about the SADS Foundation, please visit www.StopSADS.org.