This year, as the sun rises on the 25th Anniversary of the SADS Foundation, we celebrate the privilege to have served families with SADS conditions since 1992. As we commemorate this milestone, our services with the partnership of our volunteer committees will continue to support and advance the current and yet-to-be-determined needs of the SADS community. Throughout
2017, The SADS Foundation will make key announcements to include the following:

Significant Program Advancements
Program directors will share changes or additions in our programs including Prevention & Awareness, Patient & Family Support, Medical Education, and Research & Advocacy as we continue making a difference saving the lives and supporting the families of children and adults who are genetically predisposed to sudden death due to heart rhythm abnormalities

25th Anniversary Take Steps to Stops SADS Campaigns
We ask you to join in this year's monthly campaigns to support the SADS Foundation achieve our mission. Each month, we will either renew a long-established campaign or reveal a new campaign as we take a large collective step towards fulfilling the goals and the objectives of the next 25 years.  And just for fun, be watching for random surprises to be announced beginning with a Fun February Revival.

Take Steps to Stop SADS Awareness Activities
Help us to spread awareness about SADS conditions throughout the year as we offer an awareness activity every other month for you to share in your community. The first activity which is ready for the Heart Month of February is the SADS Foundation Red Kit for families to share at all the places they live, work and play. To find out more, read the Red Kit article below.

If you would like to sign up to be a SADS volunteer to participate in these bimonthly campaigns, we will send you a Take Steps to Stop SADS T-Shirt and put you on a mailing list to automatically receive any awareness materials throughout the year. Please contact Awareness and Outreach Coordinator Chelsey at 801-272-3023 or chelsey@sads.org for further information.

Take Steps to Stop SADS!!
Celebrate the 25th Anniversary of the SADS Foundation!!
Awareness Activity #1:
Family Red Kit
Order the Awareness Activity #1 - the Family Red Kit - right now to share during the Heart Month of February in all the places you live, work and play. Deliver to places such as your office, your church, your gym, or any other place you frequently visit.

The kit includes:
2 Posters
5 Wristbands
5 CPR Sheets
5 SADS Foundation Brochures

Click here to order your kits. If you have any  questions, please contact Chelsey at 801-272-3023 or chelsey@sads.org.
SADS Foundation Webinars Continue
The SADS webinar series was designed to educate genetic counselors, physicians, and other healthcare providers about the care of families with inherited arrhythmias and genetic testing implications.

Our current series, presented in partnership with Invitae, provides the Latest Diagnosis and Treatment Strategies for AVRD/AVRC, LQTS, and CPVT. The next webinar will feature internationally recognized CPVT expert Professor Silvia Priori, MD, PhD. Professor Priori will present her findings and experiences with CPVT at 11:00 am EST on February 2, 2017. To register for this free webinar with Dr. Priori click here.

SADS first webinar series, which also was a resounding success, is always available for viewing here.
Applications Being Accepted for the Young Investigator Awards in Cardiac Channelopathy Research
yia research image
The SADS Foundation is delighted to announce the Ninth Annual SADS Foundation Courts K. Cleveland Jr. Young Investigator Awards in Cardiac Channelopathy Research to encourage the next generation of researchers in SADS conditions. As in past years, there will be a BASIC SCIENCE award and a TRANSLATIONAL/CLINICAL SCIENCE award given.  Both awards will be administered by the Pediatric and Congenital EP Society (PACES).  
 
Submission Deadline: March 26, 2017
 
Award:
  • $500 to the recipient
  • $1,250 to the recipient's mentor or host institution to offset the cost of attending the annual HRS meeting
  • Recognition with a SADS Foundation YIA plaque
  • Presentation of the award at the annual PACES meeting on Wednesday, May 10, 2017

For more information, click here

SADS NYU Family Seminar


Please join us for the Update on Inherited Arrhythmias: Recent Advancements in Therapies and Diagnosis Offered by the SADS Foundation and NYU Langone Medical Center's Cardiovascular Genetics Program. To find out more, click here.
Event Date: 04/29/2017
Event Time: All Day
Event Location: NYU Langone Medical Center

*Advanced Registration Required, please click here.
Patient Day 2017
All families are invited to the Ultragenix & Audentes sponsored Patient Day 2017, scheduled for Saturday, April 22, 2017 in Novato, California. The event is a day of food, games, refreshments, live music, and celebration of the strength and courage of families living with rare disease. For event details, travel scholarship information and to register, please click here.
 
Travel scholarships are available. The awards will be sent out after February 20, 2017, once a decision is made.
Retreat for Mothers Who
Have Lost Young Children

The SADS Foundation is again sponsoring two mothers who have lost young children to SADS diseases to attend the Hayden's Heart 'Healing of the Heart' retreat on July 13-16, 2017, at Bailey Farms, Ossining, New York. It is a special place for grieving mothers to connect and heal with other bereaved mothers. Their goal this year is to again create the same peaceful space for 'heart angel mamas' by offering healing techniques, group discussions and activities, personal reflections and other methods to assist in the healing process. Comments from past participants: "The retreat is life changing." "I now have 50 women that I can call sisters we are family now." "Thank you to everyone who encouraged me to come on this trip and to the moms who planned this retreat and the moms who are experiencing the love and peace I'm experiencing this weekend."
 
To apply for one of the scholarships, please contact Director of Family Support Lynn Johnson at lynn@sads.org.
 
For more information, click here.
Heart of the Matter
- Ask the Experts

The SADS Foundation is delighted to re-introduce the cutting-edge program The Heart of the Matter - Ask the Experts. 

This innovative program features questions regarding Long QT syndrome and other SADS conditions, with answers from some of the world experts.  Physicians, health care providers and affected families may submit questions.  The top-ranked questions are answered by a SADS physician expert via video.

In addition to asking new questions, you may view answers to already submitted questions such as:

  • What is your take on mass screening of athletes and infants for LQTS?
  • When is a fainting episode a concern for a SADS condition?
  • Is swimming a trigger for a Long QT Syndrome episode?
  • Does the drugs-to-avoid list mean you must always avoid those drugs or can you take some with a physician's guidance?
  • When are they going to know what mutations are dangerous and which ones will never have an event?
Please feel free to ask a question at any time and help us to build our library of The Heart of the Matter - Ask the Experts. You never know when someone else will have the same question you do. Click  here to visit now.

Affordable Health Care Advocacy
The SADS Foundation joined 73 other organizations in signing a letter to President-elect Trump and Congressional leadership explaining the critical role that high-quality and affordable health insurance plays in helping our communities access essential treatments and care.

The letter was mailed, emailed and, in some cases, delivered in-person to the incoming administration and Congressional leadership before the Christmas holidays. We ask you to share your personal stories with your representatives.  Please let President-elect Trump and Congress  know that health care matters to individuals with rare and chronic health conditions.

To read the entire article, please click here
SADS Family and Director of Family Support Featured on Local News Program 
Marlene Rios and Cassio Huerta have a beautiful family. Together they have three kids ages 3 to 10, but last year they had a bombshell dropped on them.Their youngest was diagnosed with a rare form of Long QT Syndrome. Shortly after their then 2 year old's diagnoses, two other family members were diagnosed with heart conditions as well.

Lynn Johnson, Director of Family Support with the Sudden arrhythmia Death Syndrome Foundation said Long QT Syndrome is detected in 1 in every 2000 live births, and it can be genetic.
 
"Each parent has a fifty-fifty chance of passing it down to every child, and a brother and sister have a fifty-fifty chance of sharing the gene. So if one family member is identified we want to check everyone in the family," explains Johnson.

Click here for full article.
Massachusetts Bill Will Require All Schools to Have AEDs 
Michaela Gagne Hetzler, school adjustment counselor at Diman Regional Vocational Technical High School in Fall River, Massachusetts, has been a long-time advocate of the new Massachusetts bill, which will require all schools to have AEDs. "It's pretty awesome," Hetzler said. "Quite simply, it saves lives."

Michaela was diagnosed with LQTS at age 15, and after her plans for Division I soccer were derailed, she entered the Miss America pageant, competing as Miss Massachusetts 2006. As far as she knows, she is the first Miss America contestant to compete with an ICD.

Gov. Charlie Baker was scheduled to sign the bill last Friday. The bill will require every school in Massachusetts to have lifesaving automatic external defibrillators on hand by July 2018.  Schools that cannot afford a defibrillator can apply for a hardship waiver and receive help with the purchase, roughly $800 to $1,000 per unit.
According to the AHA, a child has a sudden cardiac arrest every three days in the United States. About 20 percent of the U.S. population is at a school on any given day, whether for work, classes, professional or parent visits, plays, voting, or other programs.

Click here for full article. 
SADS Foundation Has Their Own Unique Link at AmazonSmile.com 
Did you know that the SADS Foundation has a unique AmazonSmile link that makes it easier for you to find the SADS Foundation and support us? Just click here to be taken directly to smile.amazon.com and be asked if you want to support the SADS Foundation.
Once you have selected the SADS Foundation, we will receive 0.5% of the price of all your eligible smile.amazon.com purchases.And remember, please use www.smile.amazon.com Only purchases made at smile.amazon.com are eligible for donations.

Be sure to share our unique link on your website, in email, and on social media.

Please contact Jan at 801-272-3023 or jan@sads.org, if you have any questions. 
New CredibleMeds® Mobile App Available for QT Drugs Lists
The safe use of the CredibleMeds® lists of medications requires that users have the most up-to-date lists of drugs.  Therefore, we are very pleased to announce a new tool to help you assess the safety of medications:   
 
CredibleMedsMobile App is now available free! You can access by clicking one of the following versions:
 


The App is synced to the CredibleMeds drugs lists and is therefore always an up-to-date resource for you to search for drugs of interest.  We hope you will find the App to be of value and we seek your feedback for ways they might be improved to better serve your needs.

We also want to announce that the following drugs that have been added to the drugs lists at this time: Olanzapine (moved), Terlipressin, Bendamustine, Melperone, Romidepsin and Droxidopa. 
Simon's Fund Launches GotAED.org to CrowdFund an AED for Your Group
The mission of GotAED.org begun by the founder of Simon's Fund Darren Sudman is to protect children from sudden cardiac death by making it possible, practical and affordable for youth-related facilities to acquire an AED device.

GotAED brings generous people together with youth facilities in need of AED devices. The process is simple. A facility starts a campaign and shares its story. The campaign goal is equal to the cost of one AED device and wall cabinet. This price has been negotiated by GotAED with licensed AED distributors. The public finds a campaign and makes a donation. Once the campaign goal is achieved, GotAED uses the funds to purchase the AED and cabinet. The AED distributor ships the AED device and cabinet to the facility. Now, you've got AED! To find out more, click here.  
January 2017 - In This Issue
Editor: Jan Schiller
Contributors: Alice Lara, Lynn Johnson, William Shiflett, Corinne Maynes
Events
September 22-24, 2017
10th Annual International SADS Foundation Conference
Toronto, Ontario , Canada

September 22, 2017
10th Annual International
SADS Foundation Conference Accredited Medical Sessions
Preventing Sudden Cardiac Death:  Risk Profiles and Red Flags
Program Directors: Joel Kirsh, MD; Susan Etheridge, MD; Robert Hamilton, MD; Danna Spears, MD

January 20-21, 2017               
Anaheim, CA
   
March 17-19, 2017           
Washington, DC
 
April 22, 2017
Patient Day 2017
Novato, CA

April 29,2017
SADS NYU Family Seminar
New York NY

May 1, 2017        
New York, NY
 
May 10-13, 2017               
Heart Rhythm Society Scientific Sessions                              
Chicago, IL

July 13-16, 2017
Healing of the Heart Retreat
Ossining, NY 
Get in Touch

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