March 2015
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March 2015: In This Issue:
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SADS 8th International Conference Family Sessions
 According to prior attendees, the content of our Family conference has always been top-notch, but you wanted more input. More time to connect with other families. Less lecture-style presentations and more small group discussions and question & answer sessions. More variety in breakout sessions to attend. With this in mind, SADS staff members began meeting in August of 2014 with a group of interested parties, including individuals and families living with SADS conditions, as well as families impacted by SADS that were also health care professionals. We've reached out to a comedy improv group for Saturday evening to encourage more interaction amongst and between established SADS family members and our newest additions. And we're working with our speakers and panels to facilitate more question and answer sessions and informal discussion of topics. We here at the SADS Foundation are excited to see how these improvements to the program impact your experiences at the upcoming conference. For a draft agenda of the Family Conference general conference, click
here. We look forward to seeing you!
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21st Annual No Ball at All
The SADS Foundation is celebrating the 21st Anniversary of No Ball at All! We are honoring Justin Matthew Paul who had an uncertain beginning, but is now a thriving three-and-a-half year old.
"The SADS Foundation is a remarkable organization that has helped us in Justin's journey to thrive as a happy and healthy little boy," says Jennifer Paul, "They helped our family during tough times, helped prepare us for Justin to enter preschool, and to start a local network of SADS families. They do an amazing job in educating, advocating and supporting our community."
If you would like more information, please contact
Jan Schiller at
801-531-0937 or
[email protected] or Click
Here. Together we can support families and save lives!
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Nominations Open for the 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 Snider Cardiovascular Institute at Fairfield Medical Center and the SADS Foundation look forward to presenting this award during SADS 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
May 31, 2015. Please contact
Jan at
[email protected] or
801-531-0937 to obtain a nomination form.
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.
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Here are just a few of the many ways to give to the SADS Foundation and help us further our mission:
Vehicle Donation Program
Donate your car, boat, truck, RV, Jet Ski or snowmobile to The SADS Foundation and receive a tax deduction.
This no-cost, no-hassle process begins when you contact our fundraising partner,
Donation Line LLC at
877-227-7487. Make sure to ask for our extension:
2828.
Or you can go to
http://www.sads.org/Get-Involved/Vehicle-Donation-Program to donate online. Please have your title in hand when you contact us to donate.
Give While You Shop
:
iGive.com
Join for free, shop or search online, and help the SADS Foundation! Be a part of the first and largest online network of shoppers, online stores, and worthy causes dedicated to turning everyday online shopping and searching into much-needed donations. Plus, you get access to free shipping deals and exclusive coupons, on top of the great deals you'll find every day through iGive.com's network of 1,000+ stores.
Shop at 1,000+ top-notch online stores, iGive.com's mall includes: Amazon.com, Pottery Barn, REI, Staples, Petco, Expedia, Best Buy, QVC, and many more. Best of all, up to 26% of your purchase at each store is donated to your favorite worthy cause. Many of these contributions could even be considered tax-deductible.
Raise a Penny Per Search at
www.iGive.com! Why not raise money every time you search the web? Try iGive's search engine and enjoy free, easy fundraising for the SADS Foundation. Why not help a good cause today? Please visit
www.iGive.com/SADSFoundation.
AmazonSmile
AmazonSmile is a website operated by Amazon that lets customers enjoy the same wide selection of products, low prices, and convenient shopping features as on Amazon.com. The difference is that when customers shop on AmazonSmile (
smile.amazon.com), the AmazonSmile Foundation will donate 0.5% of the price of eligible purchases to the charitable organizations selected by customers.
When first visiting AmazonSmile, customers are prompted to select a charitable organization from almost one million eligible organizations. In order to browse or shop at AmazonSmile, customers must first select a charitable organization.
Remember, if you want Amazon to donate to The Sudden Arrhythmia Death Syndromes Foundation, you need to start each shopping session at the URL
http://smile.amazon.com, and we will donate 0.5% of the price of your eligible purchases.
Workplace Giving
Check with the company where you work. Many companies have an employee giving fund through payroll deduction that allows giving to be hassle-free. Additionally, many companies will match donations that an employee contributes to a charity, doubling the impact of your personal gift. Check with your company's human resources department for further information.
Another way companies allow for giving through the workplace is to sign up for payroll deductions through the United Way or Combined Federal Campaign workplace giving programs. The SADS Foundation receives gifts from our families through both of these programs that add to the support needed to fulfill our mission.
If you have any questions about any of the above easy ways to give, please contact
Jan at
[email protected] or
801-531-0937.
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Summer Camps: Keeping Kids Safe while Staying Active
When sending your child to summer camp, it is important to be sure that the camp is aware of his or her SADS condition and is properly prepared to respond in the event of an emergency.
Summer camp is something everyone can enjoy with a few easy precautions, including making sure staff are CPR trained and that they understand and avoid SADS triggers (startle, stress, etc.) when possible. By making sure camp staff members are aware of your child's medications, AED (where indicated) and care plan, you know that your kids are having fun and making friends in a safe and healthy environment.
You can find a list of special camps for children with congenital heart conditions, implanted devices, etc. on our website at
http://www.sads.org/living-with-sads/Emotional-Support/For-Kids/heart-camps-for-kids. While kids don't need to attend camps that cater to SADS-specific conditions, many families have told us that specialty camps create a unique experience and can help to address support issues that regular camps are not as easily well-equipped for.
If you have a great recommendation (heart-related or otherwise) for a summer you're your child has enjoyed, please contact
Matt at
[email protected] or call
800-STOP-SAD to share; we'll be sure to include it on our website and in potential future e-newsletter articles closer to the summer.
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Rationale and objectives for ECG screening in infancy
Authors Michael Ackerman, MD PhD, Phil Saul, MD, Peter Schwartz, MD, and John Triedman, MD discuss electrocardiographic (ECG) screening in infants and children who may be at risk of sudden cardiac death (SCD). While the topic is controversial, both rational and emotional arguments have often been given equal weight. The authors have direct experience in this field, but have different backgrounds and have expressed divergent views on this topic. They attempted to build consensus among themselves on the basis of the available facts, in the hope of providing an unbiased review of the relevant science and policy issues in favor of or against ECG screening in infants and children. This report presents their shared view on this medically and societally important topic. Long QT Syndrome (LQTS) satisfies several criteria that may make ECG screening worthwhile: it is not rare (~1 in 2000 births); ECG diagnosis is feasible and can be used to trigger appropriate genetic testing; it causes approximately 10% of cases of sudden infant death syndrome (SIDS) as well as deaths in childhood and later in life; and effective treatments are available. By stimulating cascade screening in family members, diagnosis of affected infants may also prompt identification of asymptomatic but affected individuals. Neonatal screening is cost-effective by conventional criteria, and with a corrected QT (QTc) cutoff of 460 ms in 2 different ECGs, the number of false positives is estimated to be low (~1 in 1000 births). It is their conclusion that parents of newborn children should be informed about LQTS, a life-threatening but treatable disease of significant prevalence that may be diagnosed by a simple ECG.
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Ellie Wilhelm
 Ellie Wilhelm is my heart hero in every sense. She has risen above her own physical challenges to inspire and support others facing similar ones. After receiving a pacemaker at age 16, she began running as a way to test her limits and improve her cardiovascular health. She eventually completed her first marathon and was selected as a 2012 Medtronic Global Hero.
Ellie is now a "SoleMate" for Girls on the Run in inner-St. Louis, an organization that provides self-esteem, healthy living and team building programs for girls. She is involved in support and fundraising events for The Children's Heart Foundation, St. Jude's Hospital and a captain for the Ironheart Racing Team.
When not running, she is frequently on the sidewalk with posters cheering on fellow runners overcoming heart challenges, like myself (LQT2/ICD). When I mentioned to Ellie a lady from St. Louis I'd met at the Columbus SADS conference who was struggling with her new LQT2 diagnosis and cardiac implant, she immediately reached out to her to offer friendship and a local support group.
Ellie's mission is for other young people with congenital heart defects to know it may take a while to adjust after a diagnosis or surgery, but it WILL get easier. She truly practices what she preaches: "Never give up. Aim High. Stay positive. Surround yourself with supportive people. Don't quit. You can do it...Finish strong!"
-Submitted by Erin Clark
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Lisa Trotter
I would like to nominate Lisa Trotter as a Heart Hero. People say I should write a book because we have endured so much in our life and we still come out on top. I will try to make this short and sweet.
 Lisa has gone through three major life events that no child should ever go through.
On January 13th, Lisa was hospitalized for ICD Placement. After everything was said and done, Lisa said she was glad to have the procedure done. When I asked why. She smiled and said, "Because I feel safer and you don't have to carry around your backpack with my heart machine anymore."
Lisa just turned nine and is doing well. After losing her father, almost losing her own life, living with SADS and an ICD, Lisa still manages to smile. She proudly wears her badge of honor and never complains. We are not supposed to go far from land but we are going on a 7 night Disney cruise. If anything happens at least we will be having the time of our lives. Living with LQT1, we are not promised any tomorrows and I will do anything in my power to make Lisa's dreams come true. She deserves it. Lisa is truly my Heart Hero.
-Submitted by Cindy Trotter
To read Lisa's full amazing story please
click here.
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 I consider myself incredibly fortunate to become a member of the SADS team in providing information, education, and support for families impacted by SADS. I recently received my BS Degrees in Anthropology and Peace and Conflict Studies from the University of Utah, and am currently in the process of applying to law school. I have a passion for social justice issues and the important work done in the non-profit sector. In addition to my new position here at SADS I also work at the Fourth Street Clinic and the Bateman-Horne Center of CARE (formerly O.F.F.E.R.), providing a variety of services including outreach, fund development, compliance, and advocacy. I look forward to working with children and families in identifying potential risks and/or signs of an underlying SADS condition, and connecting families with medical professionals and supportive services so that children diagnosed with SADS can live happy, healthy lives.
Amanda Roosendaal --Family Support Intern
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EVENTS
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Heart Rhythm Society Sessions
May 13-16th, 2015
Boston, MA
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SADS 8th Annual
International Conference
May 29th - 31st , 2015
Long Island, NY
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