SADS 20th Anniversary Logo

July 2014

July, 2014 - In This Issue:
2nd Annual Young Hearts with ICDs in Utah
The Second Annual Young Hearts with ICDs Utah Conference is being held this year on Saturday, August 30th at the Marriott University Park Hotel in Salt Lake City, Utah. The conference will include a formal program and also provide opportunities for conference participants to interact with exhibitors who represent industries related to ICDs. These include the genetic testing and medical alert identification community, the SADS Foundation, and many others. Attending will provide an opportunity to hear health professionals speak about cardiac health, ICDs, healthy living, and also hear directly from patients about their own experiences living with an ICD. For more information, please contact Tiffany ( or Patricia (, and visit the event page here. The registration deadline is August 1, 2014.
New SADS Safe Schools Website
With summer in full swing, it's time to start thinking about making an appointment with your school health professional to make sure your child has an updated care plan for the 2014-2015 school year. The SADS Foundation is in the process of giving the SADS Safe Schools website a facelift to better help you. The website will include separate pages for parents, school health professionals, teachers and coaches, with downloadable forms for review and use in your outreach. Click here to view the SADS Safe Schools website and order your SADS Safe Schools Materials Packet today!

If you have any questions about how to keep your child safe this school year, contact our Family Support Coordinator, Jenny Hoggard, at or call 1-800-STOP-SAD.

Climb to Conquer SADS is on in 2014!
The SADS Foundation is hosting its 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.

This year climbers will hike Scotchman's Peak outside of Sandpoint, Idaho. If you are interested in making this climb, please notify Jan Murphy at the SADS Foundation at 801-531-0937 or as soon as possible.

Additionally, individuals, 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.

Once again, please contact Jan Murphy 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.

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!      
SADS Physician Referral Network
Have you or one of your children just received a SADS diagnosis? Have you recently moved and need to find a new cardiologist or electrophysiologist in your area? Did a family member contact you about a SADS condition, and you want to know about your family's risk of inheriting an arrhythmia? The SADS Foundation has a Physician Referral Network that might be helpful to you in finding a doctor/specialist that can help you navigate SADS conditions, assist with treatment options, and provide support and medical advice on living and thriving with SADS.

Our Physician Referral Network is comprised of medical professionals with an interest and background in SADS conditions who have an established relationship with the Foundation. To find a new cardiologist or electrophysiologist in your area, click here for more information, email, or call 1.800.STOP.SAD for support. And if you have a physician that isn't currently a part of our network, please encourage them to sign up to become a part of it! Physicians can become members of the network by clicking here.
New LQT3 Facebook Group
Living with a genetic condition that affects daily living can be discouraging and difficult at times. However, knowing and conversing with those who are going through similar life experiences can be uplifting and empowering. The SADS Foundation encourages everyone to find and bond with people that are living with conditions similar to them.  Thanks to advances in genetic subtyping, support groups has been forming for specific types of SADS conditions. Recently, a new Facebook group that has formed for those who have LQT Subtype 3 (LQT3). In this new group families and patients can exchange support, education, and knowledge concerning LQT3. Find new friends who experience life just as you do! If interested in joining this group you can visit the following link: 
Saving Lives with CPR
Being prepared for sudden cardiac arrest is a tough but vital part of living with SADS. A great way to be prepared and respond to such an occurrence is through cardiopulmonary resuscitation (CPR). Early CPR response is critical in increasing the odd of surviving a cardiac arrest episode. There are now applications designed to help aid in faster response to sudden cardiac arrest events. To learn about these exciting applications and how you can participate, you can visit these sites: and

Susan Koeppen, a TV News Anchor in Pennsylvania, was preparing for a half-marathon when she experienced sudden cardiac arrest. She attributes quick CPR response as a main reason for her living and thriving today. To read Susan's story click here.  

Being prepared isn't just your responsibility, and many states have proposed legislation that will increase the number of people who will be prepared to provide CPR in emergencies. In June, the New York Senate unanimously passed the CPR in schools bill which makes CPR and AED instruction part of the school curriculum for all students prior to graduation. To learn more click here. We applaud these efforts and stories and encourage everyone to stay updated on current CPR guidelines and procedures; it may be the difference between life and death!

Volunteer Events!  

Last year, SADS Foundation volunteer fundraisers held more than 25 events, raising more than $160,000 to help support families and save young lives. Activities ranged from Brittany's Trees, Oktoberfest Parties and Benefit Concerts to 5K runs, Golf and Poker Tournaments, and even a Roller Derby! All of these events raise awareness and funding while bringing family, friends and community together to share in the excitement and camaraderie of supporting the SADS Foundation.

A long-running event that is held by our wonderful volunteer fundraisers is the Ryan Weidler Golf Tournament. Ryan's sister, Megan O'Donnell holds this event in Ryan's memory annually. Ryan loved golf and his family found a way to both support the SADS Foundation while spreading awareness doing something Ryan loved to do! Check out the Weidler event here! To find out more about holding your own event or for additional ideas, check out the SADS Events page or contact Jan Murphy at

Matching the SADS Foundation Staff Members Challenge


We extend a huge THANK YOU to everyone who has donated so far to help meet the $20,000 Challenge from the Staff Members of the SADS Foundation!!

Join the team at the SADS Foundation - Alice, Matt, Christine, Jan, David, Grace, Jenny, and Tyson and generously donate right now to help us to reach the $20,000 challenge by the end of the summer.

Together, we can ensure that families with SADS conditions throughout the United States have the critical tools and resources available to enjoy a healthy and independent life!

Please click the link below to make your tax-deductible donation:


Keister Music Night  
July 31, 2014
Lansing, IL
7th Annual Patrick Joyce Fund 
August 9, 2014
Cleveland, OH 

Ryan Weidler Golf Tournament  
August 11, 2014
Norristown, PA 
A Heartbeat for Scarlett 5K 
August 24, 2014 
Rochester, NY 
A Night Under the Stars 
September 13, 2014 
Beverly Hills, CA 

Heart to Heart Conference at the Royal College of

October 18, 2014 
Cavendish Square, London



The SADS Foundation

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


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