Just-Released Policy Statement About Nadolol
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HRS conducted a survey of over 100 clinicians and found that 50% have experienced difficulty obtaining nadolol for their patients. In response to concerns from physicians, patients and caregivers, the policy statement reviews clinical evidence from studies that evaluate the relative efficacy of alternative beta-blockers such as propranolol and metoprolol. The statement concludes that nadolol is the first choice therapy in patients with LQTS and the preferred therapy for patients with CPVT.
HRS has worked together with the Sudden Arrhythmia Death Syndromes (SADS) Foundation to address this issue. "As the primary patient advocacy organization for the families of children and adults who are genetically at risk for sudden death due to heart rhythm abnormalities, we know our families and their physicians are concerned about recent difficulties in obtaining nadolol. SADS recognizes the importance of this beta blocker for the families we support and we plan to work with HRS to ensure the availability of nadolol," stated Alice Lara, President and CEO of the SADS Foundation.
HRS is aware of concerns regarding the availability of nadolol, particularly in some European countries, and encourages patients and physicians to have informed conversations about all treatment options. Based on available evidence, HRS recommends that nadolol remain available for patients with LQTS and CPVT.
Watch for more activity from the SADS Foundation as we work to make sure we have nadolol available.
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The SADS Foundation Supports
New NIH Policy on Clinical Trials
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 On September 16, the U.S. Department of Health and Human Services (HHS) issued a final rule specifying the registration and reporting requirements for clinical trials on drug, biological, and device products. It also provides a framework to implement a more efficient and effective compliance and enforcement program.
This ruling is extremely important for the individuals, families, and communities with whom we work. Clinical trials are critical to medical advances. Click here to read a statement from Genetic Alliance about this important new policy.
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SADS Safe Schools
Campaign 2016 Continues!!
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The 2016-17 school year is in full swing, and so is our SADS Safe Schools campaign! We are excited for every child who has a care plan in place at their school, and would strongly encourage anybody who has not set one up yet to start the process. Also, a large focus of our campaign this year has been placed on volunteering, and if you are interested in spreading awareness in your community, please let us know. All of our SADS Safe School materials are located on our foundation website, just click here. Should you have any questions, please contact Lynn at 801-272-3023 or lynn@sads.org. We appreciate your willingness to engage in safe schools for all! |
1st SADS Webinar Series a Huge Success!!
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The first SADS webinar series is now complete and it was a resounding success! Each of the three webinars, presented in partnership with Ambry Genetics, had registrations that exceeded our expectations. It's not too late to participate-and you can still obtain CEUs for the series. Watch anytime at www.sads.org/Medical-Professional-Education/Webinar-Ambry. Stay tuned for the next 3-part webinar series coming soon! |
Mom Gets Heart-Saving Legislation
Signed By Governor
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 A Blount County mom Rhonda Harrill used her own heartache, hoping it'll save other children. She took her mission about making schools more "heart-safe" to Nashville and on Thursday she got the governor to sign off on it.
This newest law requires teachers and students to know how to use AEDs the right way in case they ever have to use it. Rhonda Harrill says this has been nothing short of an emotional journey. The first piece of legislation she helped draft, which went before lawmakers and passed, was back in 2010.
Then this past June, she stood in front of lawmakers to have another piece of legislation signed by Gov. Bill Haslam. "He had something he needed to share with the world and I was blessed for him to choose me," said Harrill. "It's not whose gonna let me, it's who's gonna stop me."
In the newest law, schools are required to have AEDs, regularly practice using those machines, and hold drills for teachers and staff on how to quickly save someone's life when their heart gives out. Junior and senior high school students will also be trained on how to use AEDs and perform CPR. Click here to read the full article.
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The SADS Foundation Presents
Take Steps to Stop SADS
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 When: Friday, September 30 5 p.m.-10 p.m.
Where:
Meet at the Marriott Mission Valley Hotel by 5 p.m. to board buses that will take everyone to Mission Bay for the walk.
We will return to the hotel after the walk for an After-Event Poolside Reception.
Entry Fee:
Individual: $20; Family: $50
(Includes T-Shirt and
After-Event Pool Reception)  Join us for the walk along Mission Bay and an After-Event Pool Reception at the hotel with food, drink, and prizes! Just click here to register for a night of fun with our SADS family! We encourage you to make a commitment to raise at least $100 to make your steps count to Stop SADS. Start right now to reach out to all of your family, friends, neighbors, and colleagues. Click here for Fundraising Tips and Tools to help you on your way.
Special Guest
San Diego State University's alumnus Dwayne Polee Jr. is returning to help us to raise money and awareness. As a starter for the Aztecs, all eyes were on Polee his senior year. He gained national attention in December of 2014, after collapsing on the basketball court during the game. Doctors diagnosed him with Atrial Fib arrhythmia. With determination, workouts, and proper care, Polee returned to the court to finish his senior year on a high note. He now plays for the NBA's D-League Long Island Nets and educates people about heart conditions. To read more about Dwayne, click here.
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Valparaiso University the First to be Accredited as a Heart Safe University
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Valparaiso University has earned the first Heart Safe University Accreditation Award. "There has been quite a bit of attention here on campus because of it and I am excited to say that we were able to purchase five more AEDs, now up to 37," says Assistant Director of Recreational Sports Tristan Leonhard, "I have already set up training sessions for over 100 students once school begins..Not only has this made campus a heart safe atmosphere, but it is generating more awareness than I thought was possible!" To find out more, read the following articles: NWI Times and Chicago Tribune.
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Barb Almendinger Was Met with a Surprise on the First Day of School This Year
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 The Utica Junior High's eighth grade language arts teacher was surprised by the faculty with a plaque in honor of a recent accomplishment: self-publishing a book.The book, titled "A Heart in Pieces: A Journey from Grief to Grace," stemmed from coping with the death of her daughter Mary, who died suddenly when she was 8 years old in 2003. After Mary died, it took six months to figure out her cause of death, which was Long QT syndrome... click here to read the full story. This book will be for sale at the upcoming SADS Foundation International Conference. Also on sale conference weekend will be Hand-Painted Heart Necklaces by Nancy Souillard created for the Hearts for Corrine Fundraising Campaign to benefit the SADS Foundation.
  
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 David Auerbach's interest in pursuing a scientific career began during a hockey game his first year of college, when a teammate - who turned out to be a chief medical examiner - asked Auerbach if he would like to observe a case.
Now Auerbach's career is taking a major step forward with a two-year KL2 Mentored Career Development Program award from the University's Clinical and Translational Science Institute. The two-year program designed to support the early career development of multidisciplinary scientists, helping them transition to an independent career as a clinical and translational investigator.
He is now look at establishing an independent line of research, Auerbach decided to approach the problem in reverse: are people with long QT syndrome - a classically studied genetic cardiac disease that causes arrhythmias - also at an increased risk of seizures?
David Auerbach was award the Courts K. Cleveland SADS Young Investigator Award in 2013. We are so proud of his continued accomplishments. To learn more, click here. |
CPVT Syndrome Family Symposium in Boston
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For our CPVT Families in the Northeast:
 Don't miss the first-ever CPVT Syndrome Family Symposium on Thursday, November 17th, 2016, from 4 p.m. to 8:30 p.m. at the Harvard Medical School in Boston, sponsored by the Inherited Cardiac Arrhythmia Program at Boston Children's Hospital. This will be a free event bringing together families and clinical experts to discuss the latest research in genetics and treatments as well as the challenges faced by families with the diagnosis.For more information and to register go to www.childrenshospital.org/landing-pages/cpvt-family-symposium
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Baltimore/DC Area Family
Support & Educational Meeting
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 Join us for a family meeting sponsored by the Johns Hopkins Hospital Division of Cardiology and the SADS Foundation for families with cardiac arrhythmias. Dr. Jane Crosson, Director of Pediatric Electrophysiology and Dr. Gordon Tomaselli, Chief of the Division of Cardiology will be there to talk about SADS conditions and be available for questions. Literature from the SADS Foundation will also be available. If you would like to learn more about SADS and meet families with similar conditions, please join us! Please RSVP to Andy Golden at alexandandy3@verizon.net.
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The safe use of the CredibleMeds® lists of medications requires that the user have the most up-to-date lists and be aware when changes have been made. Therefore, we wish to inform you of the following:
We have evaluated the evidence for the bronchodilator olodaterol (brand name Striverdi Respimat®) and found that is has actions which pose a risk for some patients with inherited long QT syndrome. Therefore, we have added olodaterol to the list of Drugs to Avoid, if at all possible, by patients with congenital long QT syndrome.
We also re-evaluated solifenacin (brand name Vesicare®), a drug used to treat bladder spasm, currently on the Conditional Risk (CR) list. While there continues to be substantial evidence for QT prolongation, the sum of the available evidence for TdP is limited. Therefore, we are recommending that solifenacin be moved from the Conditional Risk list to the Possible Risk list.
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There's Still Time
to Register!!
The SADS Foundation will be accepting registrations until the start of the conference. Walk-ins also will be welcome.
For further details or to register online ahead of time, please click here.
Our conference hotel is
Marriott Mission Valley
8757 Rio San Diego Drive
San Diego, CA 92108
You can reserve a room by calling 619-692-3800 or online at by clicking here. Please contact the SADS Foundation at 801-272-3023, should you have any questions or need further information. |
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September 2016 - In This Issue
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September 24, 2016
Boston, MA
November 5, 2016
Iowa City, IA
(Further details coming soon.)
November 11, 2016
Dinner Seminar
with Dr. Michael Ackerman
New Orleans, LA
November 12-16, 2016
American Heart Association Scientific Sessions
New Orleans, LA
November 17, 2016
CPVT Family Symposium
Boston, MA
November 17, 2016
Dinner Seminar
with Dr. Michael Ackerman
Chicago, IL
November 19, 2016
Baltimore/DC Area SADS Foundation Family Support & Educational Meeting
Baltimore, MD
December 8, 2016
SADS Symposium
Boston, MA
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