October 2015: In This Issue

October 2015
November is Family History Month!

Take advantage of Thanksgiving and this special holiday time with family to gather information from your relatives about your medical history. Getting your family's health history is as simple as talking about it, writing it down, and then sharing it. SADS conditions are usually inherited by autosomal dominant transmission, which means that half of the members of your family could have the gene that causes a SADS condition.
Be on the lookout during the first week of November to receive a Family History Month Email with instructions about collecting your family history and a link to our pedigree kit. You could possibly save a life!

Reminder: SADS Family Support Meeting in the Baltimore/Washington D.C. Area

Saturday, November 7, 2015, from 10 am-12 noon  at Johns Hopkins Hospital. For directions and more information, click here
12th Annual Young Hearts with ICDs Conference 
Please join us on Saturday, November 7th from 11:00 am to 7:00 pm at the Sheraton Hotel in Iowa City, IA.

Come meet folks just like you and enjoy lunch, guest speakers, small group discussions, "doc talks", exhibits, and dinner! 
FREE with registration!

Presented by the University of Iowa Children's Hospital Pediatric Cardiology Department.
Celebrating 11 Years of Brittany's Trees

Brittany's Trees is a neighborhood tradition, and now nationally recognized organization that celebrates the holidays and memory of Brittany Valene who died in February 2005, just days before her ninth birthday, of Long QT Syndrome that her family and doctors thought was being controlled by medication.
Brittany's passing weighed heavy on the hearts of many, including her neighbors in Kingsport Ridge. Wanting to keep the girl's memory alive, Kingsport Ridge resident Jim Guthrie and several other community members decided to honor he
by placing Christmas trees in their front yards. "She loved Christmas," says Ruth Groh, "We used white lights to remember Brittany, as she was our angel, shining down on us."
That first year, 22 trees were placed on neighborhood lawns. It was the beginning of the Brittany's Trees fundraiser, which sells Christmas trees to benefit the SADS Foundation. Last year, more than 1,500 trees were delivered! Trees sell out quickly, so order early!
To support the SADS Foundation through Brittany's Trees, you may purchase a tree or purchase a 2015 Brittany's Trees long sleeve black t-shirt at http://www.brittanys-trees.com. Trees will be delivered, set-up and decorated beginning Friday after Thanksgiving. Tree delivery is limited to towns within 25-30 miles of Carol Stream.
Catch the spirit!
Heart Safe Schools Make a Difference!
Check out this inspiring success story from a New Hampshire school that was in the process of becoming a Heart Safe School!

Hopkinton High School in Contoocook, NH was planning its steps toward HSS Accreditation when a 15-year-old athlete collapsed at a basketball game. The movement in his chest had stopped, there was no pulse, and his face was slowly turning blue. The responders in the gym worked as a team, with one person doing CPR, one cutting his shirt off, another getting the AED and someone else calling 911. Coach Dan Meserve, the Athletic Director who initiated the compressions, had just completed his CPR recertification a few months prior to the game. The staff knew where the closest AEDs were located, in accordance with HSSA standards. The AED delivered 2 shocks before the student's heart began to beat again. The young man now has an implanted defibrillator and is doing well. 
The story gets better: our CEO Alice Lara learned about the save from the Chief Medical Examiner of the State of New Hampshire, Dr. Tom Andrew, because Dr. Andrew was the one who initiated the HSSA for the school! She talked with him at the NAME (National Association of Medical Examiners) Conference in North Carolina two weeks ago, where the SADS Foundation has been educating MEs for the past six years.
Read the coach's riveting story here, or learn more about the family here.

To learn more about how your school can become a Heart Safe School, visit our website at www.StopSADS.org/HSSA or email hssa@sads.org

National Genetic Alliance Survey
Take this ten-minute survey to help improve genetic services!   

Help Genetic Alliance better understand the needs of individuals with genetic conditions by answering questions about barriers families experience including: 1) identification of their condition; 2) finding services, information, and support; 3) accessing care; 4) telemedicine; 5) adult care; and 6) beyond the doctor's office.
Please share this link with family members, friends, and anyone else interesting in contributing  to this effort!

AHA Issues New CPR Guidelines

The American Heart Association has released updated guidelines for administering CPR. Bystanders should jump in quickly to give CPR, using breaths if they've been trained in CPR and using mobile technology to speed up the rescue of cardiac arrest victims, according to the American Heart Association's 2015 Guidelines Update for Cardiopulmonary Resuscitation and Emergency Cardiovascular Care. 
Over 326,000 out-of-hospital cardiac arrests and 209,000 in-hospital cardiac arrests occur annually. Despite advances in resuscitation science, survival rates are only about 10 percent.
Effective bystander CPR, provided immediately after cardiac arrest, can double or triple a victim's chance of survival.

Visit our website for more resources and information on the new guidelines.
Share Your Story on www.StopSADS.org!

As we prepare to celebrate our upcoming 25th anniversary, we at the SADS Foundation would like to express how honored we have been to meet many of the families we serve. Each family inspires us with their strength, courage and dedication to their own families and local communities. Thank you so much for all of the support for SADS!

One of the ways to meaning fully celebrate our upcoming 25th anniversary will be to include as many SADS family members as possible on either the In Memoriam section or Living and Thriving with SADS section of our website. These stories can be shared both to honor your loved one and to help others who have SADS conditions in their families.

Additionally, this page can be a place to set up a Family Fund that will allow your family and friends to make donations throughout the years to support the life-saving services of the SADS Foundation. All you need to do when you submit the photo and story is to give us permission to put a DONATE button on the page.

Setting up a page is easy. Visit www.StopSADS.org/Share-A-Story to submit your own. Be certain to read the stories of others as well, on our Healing Wall pages in honor of those living and thriving with SADS and in memory of those we have lost.

For assistance, please contact Jan at 801-531-0937 or jan@sads.org. We look forward to hearing from you and reading your stories - they are all so moving to everyone who is a part of our SADS family!
SADS on the Road
The SADS Foundation exhibited at the National Association of Medical Examiner's annual meeting in Charlotte, NC last week. We continued our awareness campaign of sudden death in young people and what Medical Examiners should do when they have a case-including the type of samples that they should save for possible genetic testing. We're so impressed with the medical examiners that we have worked with over the years and we're glad they are receptive to the changes in the genetics of sudden death.
We also took the opportunity to take our medical education to Duke and the University of North Carolina with two days of excellent seminars provided by Dr. Ackerman.

Upcoming Events

Find the Caymus: A Wine Tasting Event for the SADS Foundation
San Diego, CA
12 th Annual Young Hearts with ICDs Conference
Iowa City, IA
SADS Baltimore/D.C. Area Family Support Meeting
Baltimore, MD
American Heart Association Scientific Sessions
Orlando, FL
Brittany's Trees
Carol Stream, IL
3 rd Annual Coconut Creek Luminary Night
Ft. Myers, FL
Parent Heart Watch National Conference
Orlando, FL
American College of Cardiologists Scientific Sessions
Chicago, IL


The SADS Foundation

Alice, Lynn, Jan, Shianne, and Brandon