SADS 20th Anniversary Logo

August 2014

August, 2014 - In This Issue:
Research Opportunity - How Families Discuss Living with SADS Conditions
Master's student of genetic counseling at the University of South Carolina School of Medicine, Kristin Wiley, is conducting a research project that examines how parents discuss SADS conditions with their children. The study asks parents a series of questions regarding what resources they found helpful in discussing the risk of sudden cardiac events and SADS conditions with their children, as well as potential future resources that would be helpful. The study's responses will be kept anonymous and confidential, and the survey is accessible online.

For more information or to access the study online, go to, or contact Matt at 801.531.0937 or The research study has been approved by the University of South Carolina's Office of Research Compliance. We look forward to Kristin's project results and will be sure to share them when they're completed!
SADS Safe Schools Testimonial 
Take our survey now! 
This story was submitted by the Richardson Family in Lake Charles, Louisiana

"My fourteen year-old son (who was diagnosed with LQTS subtype 2) is alive and thriving today because of SADS Safe Schools! He was diagnosed at age two and was symptom-free until January of 2013. He went into ventricular tachycardia after going up a flight of stairs to get to class. The AED was less than five feet away from him. His teacher quickly grabbed the AED and engaged in his individualized care plan. He was responsive before the paramedics even got to the school!

My son was transferred to Texas Children's Hospital, where he spent two weeks in the ICU, where he underwent surgery and had an ICD/pacemaker installed. He is doing well and thriving. The doctors were amazed at the care he received and said that the plan had saved his life. We owe this to his awesome teachers and the SADS Safe Schools plan recommended by the SADS Foundation. It is important to us to get the word out and to make sure that all schools have a plan in place for these conditions. You never know when it will save someone's life! We are forever changed, grateful and thankful! Warmest, -Monique Richardson and family"

Make sure your child is prepared for the 2014-2015 school year by taking our SADS Safe Schools survey and order a materials packet at

More information about SADS Safe Schools can be found on the SADS website at
Upcoming Conferences From Coast to Coast!
The SADS Foundation has many fantastic partners and over the next few months, there are some really interesting conferences that directly impact our families and health care professionals. Here are a few conferences to take part in:

The University of Iowa Children's Hospital will be presenting its 11th Annual Young Hearts with ICD Conference on September 20th in Iowa City.
Email Brett at
to register or for more information.

Boston Children's Heart Center is hosting its first ever Annual Long QT Syndrome Family Day on November 8th in Boston. For more information, contact Kristina at or call 617-355-4213.
Lastly, the Children's Hospital of Orange County is hosting its Sports Cardiology and Sudden Cardiac Arrest in the Young on January 23-24 at the Disney Grand Californian Resort. To register online, go to the SADS website and click on the program under the "Events" tab.
Thank You for Your Action!
Recently, the SADS Foundation was  contacted about a potential change to Medicare coverage of genetic testing for Long QT Syndrome by a large insurance company serving the East Coast and parts of the Midwest. Once we received the information, the SADS staff wrote sample letters urging the company to reconsider and emailed constituents in the impacted areas to ask for their support. With only a couple of days for turnaround, The SADS Foundation was humbled and impressed by the number of people, both individuals and families, as well as medical professionals, who wrote letters urging the company to reconsider not only by copying the staff members, but also adding their own personal reasons as to why this type of change was harmful.

Your advocacy actions are critically important to shaping legislation, insurance policy coverage, and increased demands for research on SADS conditions. The SADS Foundation will continue to reach out to you when such action and advocacy alerts arise through our e-newsletters, e-mails about upcoming actions, as well as through our website at If there is an advocacy action that you know about that you'd like us to spread the word about, please contact Matt at or 801.531.0937. 
Weidler Golf Tournament
The Ryan Weidler Golf Tournament just celebrated its ninth year of raising funds in memory of Ryan for the SADS Foundation. The Weidler family has honored Ryan's life and his dedication to giving back through this wonderful event and are anxious to make the tenth tournament in 2015 the most successful to date.

The SADS Foundation expresses its gratitude for the years of support in memory of this remarkable young man.

In the all-too-short twenty-six years of Ryan's life, he developed an impressive work ethic and consequently achieved much recognition. He was a gifted athlete, playing football, basketball, and baseball throughout high school and basketball in college. But his favorite social sport was, in fact, golf, which he played regularly with family. His summer job of caddying gave him an appreciation for the game and enhanced his skills. Thus, he would have loved the tournament: an opportunity to challenge himself competitively, but also a time to laugh and have fun.

It was Ryan's grandfather who first introduced him to golf as an adolescent, and Ryan's habit of self-sacrifice would have been exercised had he been present for this tournament. Indeed, his sister and cousins fondly nick-named him "Marty" for his acts of selflessness or "martyrdom"! Ryan felt a personal obligation to give back, and he would have loved the thought of helping others through donating his personal time and talent. Even though he was, at the time of his death, still a young man climbing the business ladder, he realized the importance of contributing to causes greater than himself, and he practiced this belief.
Medical Device Recalls: How To Stay Informed
Implantable cardio-defibrillators (or ICDs) and pacemakers can be life-changing medical devices that allow people with SADS to better manage their conditions and improve overall quality of life.

However, like all advances in medicine, there are occasionally times where these technologies fail, either due to leads found later to corrode quickly, batteries to drain faster, or other product failures.

Thankfully, such recalls are extremely rare, and most physicians and cardiologists are immediately alerted about them so that patients can stay safe and be sure that the devices they rely on continue to work properly.

The SADS Foundation also sends out alerts when large medical device recalls are announced, and is committed to continuing to make sure families are quickly informed when these types of things happen. There is also a searchable website here that allows individuals to search online for specific device recalls. Be sure also to look on our website at in our News feed for our stories about recalls to stay safe, informed and empowered about your health!

Climb to Conquer SADS  

2013 Climbers 
SADS Foundation Board Member announces
8th Annual Climb to Conquer SADS Fundraiser on September 14, 2014! This mountain climbing memorial is a sponsored dedication to families who have had loved ones pass away from SADS conditions and other heart rhythm abnormalities.
Individual, families, and corporations can raise $1,000 to purchase and decorate a tribute flag in memory of someone who passed away from a SADS condition or in honor of someone living with a SADS condition. Your decorated flag will be given to a climber to take to the top of the mountain. Once there, a photo will be taken of the climber with your decorated flag. The photo and the flag will be returned to those who sent it.  
Please contact Jan Murphy at or at 801-531-0937 x105 to receive your flag and then return the decorated flag to the SADS Foundation by August 30th to make certain it reaches the summit of Scotchman's Peaks on September 14th in memory or in honor of your loved one.    
Scotchman's Peak
Scotchman's Peak
This year climbers will hike the steep Scotchman's Peak outside of Sandpoint, Idaho. One of the most popular peaks in northern Idaho, Scotchman's Peak is the highest point in Bonner County, Idaho, at 7009 feet. It is the high point of Bonner County and its prominence makes it #5 on the Idaho 100 prominence list.

If you are interested in making this climb, please notify Jan Murphy at the SADS Foundation at 801-531-0937 or or at as soon as possible. Climbers will be asked to raise $1,000 in pledges to be given to the SADS Foundation.

The funds raised through the Annual Climb to Conquer SADS will contribute to the SADS Foundation's tireless efforts to support research, awareness and advocacy for a group of genetic conditions that can strike even the healthiest young person with a catastrophic sudden cardiac arrest.

If you cannot climb or sponsor a flag, please know your donation at the following link for this event is genuinely appreciated.

Climb on! Supporting families! Saving lives!

Indiana family holds fundraiser for SADS Foundation in son's memory   

The Kiesters
The owners of Jack's Sports Bar in Lansing bring some good out of a heartbreaking loss. The couple, Lansing residents Jeff and Jeanette Kiester, lost their only son, Jake, almost two years ago due to an abnormal cardiac rhythm condition at age 26.

The couple hosted a fundraiser with great food, drink and music at their bar to benefit the SADS Foundation as well as to raise awareness about a "silent killer" which often times goes undetected in kids and young adults because of the absence of symptoms. Jake Keister was diagnosed with Sudden Arrhythmia Death Syndrome at age 8 after he fainted at school after coming in from recess.
A battery of tests was run, with neurological causes ruled out first before doctors recognized the true cause. Jake Keister took medication for his condition and never had symptoms other than the one occurrence of fainting as a child. The day he died was a normal day where he wasn't doing anything strenuous -- just getting ready for work, Jeanette Kiester said.

"People understand childhood diabetes and cancer. Something like this is a little more difficult for people to understand, but it's more common than you would think," she said. "It's not easily detected. Typical EKGs don't pick it up. In children, to recognize SADS it might take extensive tests. The first detection sometimes is if they might be playing sports."
"It's very tough. It was quite difficult losing our boy," Kiester said. "I'm very hopeful. The more people that know, the more people that stand a fighting chance to help their child. I'm sure there are other kids in the community who may have this condition and not know it."

The Kiesters' goal was to raise $5,000 for the SADS Foundation in memory of their son - they accomplished that and more!  We express our appreciation to Jeff and Jeanette and everyone who supported this event.

Goodbye David  

David Hulet
Dear SADS Family:
I'm sad to announce that after just over a year of working for the SADS Foundation, it's time for me to say goodbye. I am matriculating into the University of Glasgow next month to attend a two year graduate program for a Masters of Fine Arts in Creative Writing. This is a dream come true, and something I have been working very hard to achieve for the last three years. Now that the opportunity is here, I would be remiss to pass it up. SADS has been a great organization to work for, and I'm sorry to leave; however, I've worked out with SADS UK to do some work for them, so if you live across the pond, you'll be seeing me soon. 
All my best,


A Heartbeat for Scarlett 5K 
August 24, 2014 
Rochester, NY
IHS SADS Awareness Campaign
September 1, 2014
Irvington, NY  

A Night Under the Stars 
September 13, 2014 
Beverly Hills, CA 

Climb to Conquer SADS

September 14, 2014 

Scotchman's Peak, ID  

September 20, 2014  
Colorado Springs, CO  

Heart to Heart Conference at the Royal College of

October 18, 2014 
Cavendish Square, London
Christie's Heartoberfest  
September 27, 2014 
Saratoga Springs, NY
Jonathan R. Cowley Memorial Golf Tournament 
October 6, 2014 
Midlothian, VA



The SADS Foundation

Alice, Christine, Matt, Jan, Jenny, Grace, David, and Brandon.


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