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November 2015: In This Issue
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November is Family Health History Month!
Learn more about how to collect your family medical history and download a Pedigree Kit
HERE.
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Save the Date!
9th Annual SADS Foundation Conference
Sept. 30, Oct. 1-2 in San Diego
We are excited to announce that the 9th
Annual International
SADS Foundation Conference is confirmed for Friday, September 30 - Sunday, October 2 of 2016 at the Marriott Mission Valley Hotel in San Diego, California.
We will be partnering with Rady's Children and UC San Diego. Program directors will be Drs. James Perry, Michael Ackerman, and Susan Etheridge. We hope to see all of you at another educational and engaging conference!
Be on the lookout for further details!
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Happy Thanksgiving from the SADS Foundation!
In this season of gratefulness, we at the SADS Foundation want to take a moment to express our appreciation for our families, friends, partners, and supporters! We cannot achieve our goals of supporting families and saving lives without the piece that each of you gives to one another through the SADS Foundation. This month's E-Newsletter features just some of the activities that are provided by individuals within the SADS community. We simply say
THANK YOU!
Alice, Jan, Lynn, Shianne, Brandon
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Successful Family Support Meeting
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Jennifer White in Barcelona
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The Baltimore/D.C. Area Family Support Meeting was a great success! Planned by Andy Golden and sponsored by SADS and the Johns Hopkins Children's Center, SADS families had a chance to meet with each other and share their stories. Genetic Counselors Brittney Murray and Rebecca McClellan were on hand to provide information and answer questions. Be on the lookout for another meeting in the future!
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Jennifer White, MD, spoke at a patient and family conference in Barcelona, Spain on "Where do we go from here - the American experience" - how can people live and thrive with LQTS? Dr. White is an emergency room physician and has LQTS herself. Jennifer's talk was a big hit-and she did it in Spanish!
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Wyatt Benner's Eagle Scout Project
We have a great story this month about the Eagle Scout project done by Wyatt Benner. The SADS Foundation sent him a congratulatory letter for his Court of Honor, which took place on November 14th
. His inspiring story about his Eagle Scout project is below:
"Hello, my name is Wyatt Benner and I am 17 years old. I have recently been awarded with the honor of Eagle Scout, the highest rank in the Boy Scouts of America. For my Eagle Scout service project I chose to install an AED in my home church that I attend, and another AED in the church where my Boy Scout Troop meets. Both Churches host a lot of community events and activities and never had an AED on the premises. I chose this project for several reasons and my project has a special meaning to me because my mother has an internal defibrillator implanted because she has an SAD. We also have a family friend whose life was saved by an AED. Along with my project I provided a free training session on the use of the AED device for any member in each church who wanted to attend. The fundraising for this project took me over a year to raise all of the funds. However, you can never put a price on someone's life, and although I hope this device is never needed, I am grateful that both churches are prepared to use it if they find themselves with a cardiac emergency."
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SADS Foundation Worldwide Candle Lighting
The SADS Foundation would be honored if you posted photos and comments on our page to share with the SADS community.
May their lights shine forever in our memories!
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Recent SADS Foundation Event Highlights
The SADS Foundation recognizes the continued efforts of two long-term events held during September. First is
Christie's Heartoberfest
hosted by the Tolosky Family in Saratoga Springs, New York, for the past 10 years. The second is
Oktoberfest
hosted by the Layton Family in Colorado Springs, Colorado, for the past 18 years. Wow, that's almost 30 events between them! We extend our most genuine appreciation!
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And a special wine-tasting event was held this past October in San Diego, California.
Find the Caymus
was hosted by Scott Dailard, Rachel Flores, and Jennifer Paul with special guest Dr. Jim Perry. SADS Foundation staff members were in town for this as we were choosing the hotel for the 2016 conference. We thank our hosts for a wonderful time!
Should anyone else want to hold a fund-raising event to benefit the SADS Foundation, please contact Jan at 801-531-0937 or [email protected].
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Changes to QT Drugs Lists at CredibleMeds
Based on an analysis of emerging evidence, the following changes have been made to the Drugs To Avoid Lists:
Changes to an antipsychotic drug,
levomepromazine (brand names: Nosinan®, Nozinan®, Levoprome®), an anti-tuberculosis drug delamanid (Deltyba®), and papaverine HCl when given by infusion as part of tests to measure blood flow to the heart.
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Giving Tuesday: Keeping Hearts Beating Together
Tuesday, December 1, is this year's Giving Tuesday. |
We invite you to be a part of this day by donating now to the SADS Foundation. Join us as we provide the vital needed services to wrap around families with SADS conditions during every step of the journey: loss of a loved one, newly-diagnosed condition, lifestyle changes, physician referrals, education of healthcare professionals, community awareness, school campaigns, research advocacy, and so much more!
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Together, we will save young lives and keep hearts beating!
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Upcoming Events
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11/28
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Brittany's Trees
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Carol Stream, IL
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12/3
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Shopping with Heart
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Lake Geneva, WI
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12/4-12/5
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1st Annual Gray Solana Round Ball Rumble
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Savannah, GA
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12/12
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3rd Annual Coconut Creek Luminary Night
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Ft. Myers, FL
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