SADS Safe Schools
Campaign 2016 Is Underway!!
 
school-bus-banner.jpg
If each one of you does these three things, school will be safer for your child, as well as for all children, as we increase awareness of the risk factors for SADS.
 
1) Have a care plan in place for your child.
2) Hang a poster at your child's school.
3) Put an article about risk assessment in your school newsletter.
  • Download our "Know the Warning Signs for SADS" article here, and add your own story if you like at www.sads.org/Awareness scroll down to "Parents" section.

For further information, please contact Lynn at 801-272-3023 or lynn@sads.org.

SADS Foundation's 1st Webinar Series

Offered in partnership with Ambry Genetics.

The SADS Foundation, in partnership with Ambry Genetics, have produced a webinar series designed to educate genetic counselors, physicians, and other healthcare providers about the care of families with inherited arrhythmias and genetic testing implications.
 
The series began with a demonstration of fetal and maternal care during pregnancies affected with long QT syndrome. The session illustrated the psychosocial experience of a pregnancy affected by long QT syndrome through detailed experiences from a patient, and examined the perspective of a genetic counselor working with prenatal patients with inherited arrhythmias.
 
The second session provided a family perspective of sudden death. Two healthcare providers presented cases of sudden death and a patient, who experienced the sudden loss of a family member, shared how she received information from their heathcare team and her experiences through the different stages of her journey.
 
The third session, being held on September 7th at 12 p.m. EDT (be sure to sign up!), will provide an insightful discussion with three international experts on SADS conditions. Dr. Michael Ackerman, Dr. Sylvia Priori, and Dr. Robert Hamilton will describe their approach to diagnosing SADS conditions and contrast how their approach differs from their international partners. This session promises to provide a fantastic opportunity to learn how diagnostic procedures are performed in the United States, Canada, and Europe.
 
To learn more about our webinar series and view the sessions that were previously held, click here.
The SADS Foundation Presents
Take Steps to Stop SADS

When: 
Friday, September 30
6 p.m.-10p.m.  
 
Where: 
Mission Bay
San Diego, California

Entry Fee: 
Individual: $20; Family: $50
(Includes T-Shirt and
After-Event Pool Reception)

Event Day Registration:
Noon-5:30 p.m.

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.

Ways to Ask for Support
Prizes will be given to the individuals and family who raise the most funds to support the SADS Foundation at the After-Event Pool Reception at the hotel.
    
Activities
Participants will load buses at 5:30 p.m. at the San Diego Marriott Mission Valley Hotel (location of the 9th Annual International SADS Foundation Conference) and be taken to Mission Bay for the Take Steps to Stop SADS Event. At the end of the event, buses will return participants to the San Diego Marriott Mission Valley Hotel for the After-Event Pool Reception.

Special Guest

San Diego State University's alumnus and Reno Bighorn's forward, 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 Reno Bighorns and educates people about heart conditions. To read more about Dwayne, click here.

Dana Vollmer Wins Olympic Gold Again
Congratulations to Dana Vollmer for a winning gold, silver, and bronze medals in the 2016 Rio Olympics! She is living and thriving with SADS! To read more, click here.
Genetic Testing for Arrhythmia Syndromes Is
at the Cutting Edge of Cardiovascular Care

(Excerpted from an article that appeared in the July/August 2016 issue of HealthLeaders Magazine.)

Genetic testing in inherited arrhythmia syndromes leads to the ultimate form of personalized medicine. Melvin Scheinman, MD, chief of the Comprehensive Genetic Arrhythmia Program at the University of California, San Francisco, says "That is really what personalized medicine is all about-delivering the right care to the patient because you truly understand the patient and don't have to treat him or her as just a member of a group with certain statistical risks...The effect from genetic arrhythmia testing has been tremendous, particularly because it is so tragic when young people drop dead suddenly."

The most certain benefit of genetic testing is the ability to screen family members and identify the 50% who are not at risk, reassuring them and avoiding the unnecessary expense of further testing and precautionary care.

A challenge with genetic testing for arrhythmias is interpreting the genetic variations in a patient accurately, distinguishing between the variations that are disease-causing mutations and others that are without medical consequences, says Julianne Wojciak, MS, licensed genetic counselor.

Another issue is cost; however the situation is improving. Genetic testing used to cost between $3,000 and $10,000 per patient, but new technology is making it possible to test large amounts of DNA at a low cost. Says Wojciak, "We already have some genetic tests in the cardiac space that have an out-of-pocket, self-pay rate of less than $500."

With advancements in the sophistication and cost of genetic testing, new devices and new drugs the future of screening and treatment for SADS conditions is very promising.
To read the full article, click here. 
Nominations Open: Rob L. Walker
Heart Safe School Champion Award

The national Heart Safe School Accreditation program announces that nominations are open for the Rob L. Walker Heart Safe School Champion Award.  The award is named after Rob L. Walker who led the charge in starting the HSSA program as the superintendent of Lancaster City Schools and in the Pickerington Local School District becoming the first school district in the nation to become completely Heart Safe.
 
The Sudden Arrhythmia Death Syndromes (SADS) Foundation looks forward to presenting this award during SCA (Sudden Cardiac Arrest) Awareness Month in October. We are deeply grateful for all of the principals, nurses, parents, and other volunteers who are dedicated to making schools safer and better prepared for individuals with heart conditions, ultimately helping to save lives. Nominations can be obtained from www.StopSADS.org/HSSA to recognize an individual as this year's Rob L. Walker Heart Safe School Champion. All nominations should be completed and submitted to the SADS Foundation by September 7, 2016.
 
Heart Safe School Accreditation (HSSA) is the initiative that came to be in response to two young victims who survived sudden cardiac arrest in Lancaster, Ohio, during 2011. The HSSA program began as a pilot in Ohio in 2012. Schools that chose to become involved immediately found there was much more they could do to prepare themselves to deal with a medical emergency. The mission of the HSSA program is to assist schools throughout the country to develop skills and knowledge regarding cardiac arrest and emergency drills so that they are better prepared to save lives when these occurrences happen.

Click here for nomination form. Send all nominations by email to HSSA@sads.org.

Please contact Jan at 801-272-3023 or jan@sads.org for further details.
Special Items Available at
the SADS Foundation Conference

Two of our SADS families the Almendingers and the Lahrs will have special items available to purchase at the SADS Foundation Conference. Here's a sneak preview.

"A Heart in Pieces"" by Barbara Jo Almendinger Overview
When I heard you were gone I felt my heart shatter to pieces and a part of me died with you. I don't think my heart will ever feel whole and complete again. It aches every minute of every day. I wonder if it will ever stop hurting. Are these thoughts or feelings you can relate to? If you have ever experienced devastating loss or life-altering events that have made you feel this way, then this is a book for you. A Heart in Pieces describes a journey of searching for answers about unexplained sudden death in one family and will inspire you not to give up in spite of your tragedy or loss. It will offer you hope, healing, and courage even when you feel like your heart has been shattered to pieces.

Hand-Painted Heart Necklaces by Nancy Souillard created for the Hearts for Corrine Fundraising Campaign to benefit the SADS Foundation. Each necklace is one-of-a-kind just like each of our SADS family members. A copy of "A Heart in Pieces" and a beautiful heart necklace will make the perfect combination gift for someone special in your life. Both items will be available after the conference also. For more information, please contact Jan at 801-272-3023 or jan@sads.org.


The Fests Are Coming!!
Two of our longest-running volunteer fundraising events are coming this September. The first will be the 19th Annual Hanss Oktoberfest on September 17 in Colorado Springs, Colorado.

The second will be Christie's 11th Annual Heartoberfest on September 24 in Saratoga Springs, New York.  If you are in one of these areas, check out the fun,food, drink, and auction items.
 
TEDx Talks Features
16-year-old Sarah Skinner

Sarah Skinner was diagnosed with Long QT at 5 days old. She is now 16 and entering her junior year of high school. Last fall, she was invited to do a TEDx Youth talk and she chose to share her viewpoint on living with an invisible disability. The video is available on youtube, just click here. We extend our congratulations to Sarah for doing such an amazing job!!
Special Note: Avoid LQTS App
The safe use of the CredibleMeds® lists of medications requires that the user have the most up-to-date versions.  Therefore, we wish to inform you of the following changes to the lists on the website: 

Fluvoxamine (brand names Faverin®, Fevarin®, Floxyfral®, Dumyrox® and Luvox®), a drug used to treat obsessive-compulsive disorder and other psychiatric illnesses, has been added to the list of drugs with Conditional Risk of torsades de pointes (TdP).  Its use has been associated with TdP under certain conditions, especially when used in excessive doses or with drugs that prolong the QT interval.

Amphotericin B (brand names Fungilin®, Fungizone®, Abelcet®, AmBisome®, Fungisome®, Amphocil®, Amphotec®) is an antifungal drug found to be associated with TdP under certain conditions, especially when used with drugs that prolong the QT interval, when it has induced hypokalemia or when given by rapid infusion. Therefore, it has also been added to the Conditional Risk list.

The antipsychotic zotepine (brand names Losizopilon®, Lodopin®, Setous® and Zoleptil®) has been added to the list of drugs with Possible Risk of TdP.

Another antipsychotic, sultopride (brand names Barnotil®, Topral®, Barnetil®), a drug marketed in Asia and some European countries, has been added to the list of drugs with Known Risk of TdP.

The SADS Foundation has become aware of an "LQTS" App for Drugs to Avoid that is NOT accurate and is NOT recommended for use by our families. (There is another app we previously evaluated, "EP Tools", that is also not recommended.) We will keep you updated if we learn of an app that is useful. For now, and as always, we recommend the Credible Meds website as the best resource for Drugs to Avoid for LQTS: www.crediblemeds.org.
August 2016 - In This Issue
New Conference Packages


Combo Package 
Registration & 3-Hotel Nights
Save $50 if you register for the conference and reserve your hotel at the same time. 

Click here to register and enter MARRIOTT in the Promo Code box and click the APPLY button to receive the $50 discount. Then call Mission Valley Marriott at 619-692-3800 or click  here
to register at the hotel for   
Thursday, Friday and Saturday nights.     
 
Extended Stay Package
We have arranged for our guests to be able to stay for Sunday and Monday nights at our conference rate of $139 depending on hotel availability.

What a great opportunity to spend a couple of extra days vacationing in sunny and beautiful San Diego!
  
Click here to register for the conference and don't forget to uses the Promo Code for a $50 discount. Then call 619-692-3800 or click here to register at the hotel for the three conference nights plus the additional nights you desire.

Please contact the SADS Foundation at 801-272-3023, should you have any questions or need further information.
Events
September 7
Webinar

September 7-13
Minneapolis, MN

September 17
19th Annual Hanss Oktoberfest
Colorado Springs, CO

September 24

September 30

October 21-22
HCMA Annual Meeting
Boston, MA

November 5, 2016
13th Annual Young Hearts with ICDs Conference
Iowa City, IA
(Further details coming soon.)
Get in Touch

1-801-272-3023

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