Welcoming New Board Members
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 Dr. Ian Law is a Pediatric Cardiologist and Electrophysiologist, and the Division Director of Pediatric Cardiology in the Department of Pediatrics at the University of Iowa Children's Hospital. His primary area of interest is treating children and young adults who have abnormal heart rhythms, spanning from fetuses with arrhythmias to adults with congenital heart disease in their 6th decade of life, having been born with complex heart disease and later developed arrhythmias as a result of their heart disease or heart surgeries. While his work is primarily focused at The University of Iowa, he performs clinics and procedures in 4 different states, performing heart catheterization procedures and implanting devices (pacemakers, implantable cardioverter defibrillators - ICDs). Dr. Law is a Past President of the Pediatric and Congenital Electrophysiology Society (PACES) and now will support the SADS Foundation as the representative of PACES on our Board of Trustees. We certainly welcome Dr. Law on our team to work with us and help us to strengthen an already strong relationship with PACES.
 Brynn Elena Dechert-Crooks is a Pediatric Nurse Practitioner at the C. S. Mott Children's Hospital where her specialties are Pediatric Cardiology and Pediatrics and her clinical interests are Clinical Electrophysiology Device Therapy and Congenital Heart Disease. Brynn also served as the VP for Associates with the Pediatric and Congenital Electrophysiology Society (PACES) and has been a member of the SADS Foundation Medical Education Committee. Now, we are extremely fortunate to have her increase her involvement with the SADS Foundation as a new board member on our Board of Trustees.
 Mary Ann Ciciarelli is a Director of Product Marketing for Early Learning at Houghton Mifflin Harcourt. She has been a huge support of her son and also the SADS Foundation starting in 2010 through November 24, 2015 when Lee passed away from complications from Timothy Syndrome. Now Mary Ann continues her valuable work as one of the founders of a Facebook Support Group for families who have members with Timothy Syndrome. This has been a place for educating, sharing, and being there for each other in celebratory and difficult times. To expand upon the purpose of this support group, Mary Ann, Courtney Waller, and Katherine Timothy with the SADS Foundation have established the Timothy Syndrome Alliance (TSA). This organization is charged with bringing more research, awareness and support to Timothy Syndrome. In conjunction with this new role, Mary Ann is a new trustee on the SADS Foundation Board of Trustees representing the TSA. We are genuinely grateful for the extensive efforts of Mary Ann on behalf of Lee and all other children with Timothy Syndrome
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Inherited Arrhythmias Webinar Series
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 Offered in partnership with Ambry Genetics.
This free three-part series will begin on August 3rd with a demonstration of fetal and maternal care during pregnancies affected with long QT syndrome. This webinar will also illustrate the psychosocial experience of a pregnancy affected by long QT syndrome through detailed experiences from a patient and examine the perspective of a genetic counselor working with prenatal patients with inherited arrhythmias.
Specialized physicians, genetic counselors and patients will present on the following topics:
* August 3, 2016: "The Pregnancy Journey with Inherited Arrhythmia "
* Late August (date being finalized): "The Family Experience with Sudden Death"
* September 7, 2016: "Cardiovascular Genetic Testing Practices around the World"
For more information, click here. |
33 States Now Require
CPR Training before
High School Graduation
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More than half of the United States now requires CPR training before high school graduation. We have come a long way, but still have work to do. To read the full article, click here. |
SADS Foundation Establishes
New Research Committee
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The SADS Foundation is pleased to announce the formation of our new "Research Committee" with the mission of developing a patient-centered SADS community for collecting and sharing patient-provided data on diagnosis, genetics, treatment, and for sharing ideas on how to deal with challenges faced by patients and family members with SADS-related conditions.
Our committee is comprised of SADS family members, researchers, genetic counselors, and medical professionals, many of whom wear more than one "hat". The committee is working hard on helping to evaluate proposals from companies that want to work with SADS, while being a voice for our families and looking out their best interests. We eventually hope to develop a secure platform that will provide a place for our families to share information, have discussions on topics of interest, and host a searchable database for information on specific topics. For more information, please contact Lynn at 801-272-3023 or lynn@sads.org.
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Volunteer Spreads
SADS Awareness
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 Volunteer Kathleen Gauthier spreads SADS awareness at the Red Dress Run on July 9 in Hartford, Connecticut.
"I was overwhelmed by the two ends of the spectrum. People seemed at one end to have no knowledge of SADS conditions or the other extremely personal experience. Many of the stories shared unfortunately had tragic ends. The first person I spoke to listened very intently and by the end I asked, are you in the medical field? He said yes(pharmacist), and I have never heard of this. A friend was helping at the booth I turned to her and said, that is exactly why I'm here today. Thank you for allowing me to help the mission."
We say thank you to Kathleen for being a part of our family. If you would like to help spread awareness or raise funds, please contact Jan at 801-272-3023 or jan@sads.org. |
Revive & Thrive: 3rd Young Hearts
with ICD's Conference
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The SADS Foundation is proud to be a part of the Revive & Thrive: Young Hearts with ICDs held on July 16, 2016 in Salt Lake City, Utah.
Primary Children's Hospital and The University of Utah Pediatric Cardiology formed this conference to provide support to pediatric patients, young adults, and their families affected by life-threatening arrhythmias and who have had an ICD implanted. Their goal is to bring together affected families and create an outlet to share experiences and to learn to cope with the psychosocial needs that arise.
The conference offers lunch, breakout sessions, perspectives from patients, tent activities, as well as fun and special events for the kids. Be watching for this event again next year!
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Family Support Meeting in Baltimore
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 The SADS Family Meeting at Johns Hopkins Hospital Division of Cardiology in June had a great turnout. Family members did a short intro and icebreaker and then Dr. Jane Crosson, Pediatrics EP held a 20-minute valuable Q and A session. It's a great opportunity for families to connect and meet local experts. To learn about future meeting, please email Andy Golden at alexandandy3@verizon.net.
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Special Note: Avoid LQTS App
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The SADS Foundation has become aware of an "LQTS" App for Drugs to Avoid that is NOT accurate and is NOT recommended for use by our families. (There is another app we previously evaluated, "EP Tools", that is also not recommended.) We will keep you updated if we learn of an app that is useful. For now, and as always, we recommend the Credible Meds website as the best resource for Drugs to Avoid for LQTS: www.crediblemeds.org.
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July 2016 - In This Issue
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Join Us for the SADS
Safe School Campaign
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Once again, it is almost time for kids going back to school and it is time to prepare for your child to SADS safe at school. The SADS Foundation has materials available for you to take to schools, coaches, medical professionals, and other individuals who will need to be aware of your child's condition and what to do in an emergency. Click here to order materials or contact Corinne at 801-272-3023 or corinne@sads.org if you have any questions. Let us help you to help your child to have a successful school year!
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Be looking for a separate e-mail to learn how to take advantage of our new conference packages. We look forward to seeing as many of you as possible on Friday, September 30 - Sunday October 2 in beautiful San Diego, California!
 Combo Package
Conference Registration and 3-Night Hotel Reservation
Save $50 if you register for the conference and reserve your hotel at the same time.
Extended Stay Package
The SADS Foundation has arranged for our conference guests to be able to stay for Sunday and Monday nights at our conference rate of $139 depending on hotel availability.
Payment Plan
You may pay for either package in monthly installments with the final payment required by September 15, 2016.
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Announcing the Signature Event of the SADS Foundation
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 We will be kicking off our 25th Anniversary by hosting our first new signature event Take Steps to Stop SADS on Friday evening at our 9th Annual International SADS Foundation Conference, but any of our families can hold their own Take Steps to Stop SADS event in their local community during any time of year. Information will arrive in your inbox this Friday, July 29th!
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August 3
Webinar
September 7
Webinar
September 7-13
Minneapolis, MN
September 17
September 24
September 30
October 21-22
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