SADS UK Founder to Become a Member of the Order of the British Empire (MBE)!
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The congratulatory messages are pouring into the SADS UK office, as Anne Jolly prepares to receive the extraordinary honor of becoming a Member of the Order of the British Empire (MBE), which will be presented to her by a member of the royal family at Buckingham Palace on February 28th. Anne and her husband John, founders of our international affiliate, SADS UK, are being honored for their charitable work with SADS families in the UK.
For more information, click here.
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Begin a Take Steps to Stop SADS Event in Your Hometown
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Right now is the perfect time to start thinking about hosting a
Take Steps to Stop SADS walk or run in your hometown. This newly-established signature event for the SADS Foundation has been designed to raise funds for the SADS Foundation and awareness of SADS conditions.
A packet of tips, instructions, and promotional materials have been developed for your use and can be reviewed and downloaded
here. Please reach out to Jan at 801-272-3023 or
[email protected], if you have any questions or need further details. She will be happy to walk you through the planning and marketing process to make certain your
Take Steps to Stop SADS event successful!
In addition to the tools on the SADS Foundation website, you may use our event website at
www.crowdrise.com/take-steps-to-stop-sads to set up your personal fundraising page for friends and family to donate to the SADS Foundation and be recognized as one of your supporters.
Make 2017 the year to
Take Steps to Stop SADS!
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Rare Disease Week on Capitol Hill
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Rare Disease Week on Capitol Hill brings rare disease community members from across the country together to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators.
Please visit here to register for the events below:
Monday, February 27th: Rare Disease Day at NIH
National Institutes of Health, Masur Auditorium (Building 10)
9000 Rockville Pike, Bethesda, MD 20892
Tuesday, February 28th: Legislative Conference
Presented by Horizon Pharma
FHI 360
1825 Connecticut Ave NW, Washington, DC 20009
Registration to attend in-person is closed, but you may register to participate via livestream or to view the draft agenda.
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Heart of the Matter
- Ask the Experts
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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.
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Awareness Activity #1:
Family Red Kit
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We're halfway through February which means our Family Red Kit activity is still going strong! We thank the more than 100 families who have already ordered the Family Red Kits and encourage everyone to spread awareness by distributing Red Kit materials at all the places they live, work, and play. Have you requested yours yet?
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 [email protected].
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Applications Being Accepted for the Young Investigator Awards in Cardiac Channelopathy Research
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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.
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The ECG Screening Debate - New Suggested Guidelines from the SADS Foundation
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 The use of electrocardiographic (ECG) screening to detect potentially lethal cardiac disorders is a highly controversial and passionately debated issue, however it is important to remember that we all agree on one thing:
we are all interested in preventing any and all pediatric sudden cardiac arrest. The ECG controversy centers only on
how best to screen. (If ECG screening was perfect, the debate would have ended years ago!). The SADS Foundation believes that
there are at least 10 issues that should be addressed before any ECG screening program is instituted. Click
here for more information.
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SADS Foundation Congratulates Genetic Counselor Katherine Spoonamore, MS
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 The SADS Foundation congratulates Katherine Spoonamore, a genetic counselor and Assistant Professor of Clinical Medicine at Indiana University, for being featured in the Heart Rhythms Society's (HRS) Member Spotlight. The Member Spotlight is an honor bestowed upon an individual who has contributed to the HRS community of medical, allied health, and science professionals. An additional achievement for Katherine is being the first Genetic Counselor to be featured in Member Spotlight. The SADS Foundation is excited to celebrate Katherine's achievement and we look forward to working with her again in the future!
Click
here to read the full article.
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Latest Research from the CHOC (Children's Hospital of Orange County) Conference!
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SADS Board Member Brynn Dechert-Crooks, CPNP-University of Michigan Heart Center & Melissa Olen, ARNP-Niklaus Children's Hospital in Miami |
Two members of the SADS staff attended the CHOC Conference on "Sports Cardiology & Sudden Cardiac Arrest in the Young", January 20-21 in Anaheim, CA. Alice Lara, CEO, and Lynn Johnson, Director of Family Support, heard SADS Board Chairman Dr. Michael Ackerman's keynote talk on "Genomics of Sudden Cardiac Arrest", among other state-of-the-art presentations. SADS Board Member Brynn-Dechert Crooks, CPNP gave an excellent talk on "Identifying Red Flags on EKG Screening".
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The Health-eHeart Alliance Steering Committee met last month in San Francisco to develop our strategic plan for the next three years. As a patient-powered research network the Alliance is led by a coalition of patients and advocacy groups including the American Heart Association, Mended Hearts, StopAfib.org, and the SADS Foundation.
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SADS Foundation Webinar Library
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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, provided the Latest Diagnosis and Treatment Strategies for AVRD/AVRC, LQTS, and CPVT. The series final webinar featured internationally recognized CPVT expert Professor Silvia Priori, MD, PhD. Professor Priori's webinar was very well attended and provided an excellent capstone for the series.
The SADS webinar series is always available for viewing
here.
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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.
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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.
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CredibleMeds® Lists Revised
and Mobile App Available
for QT Drugs Lists
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The safe use of the CredibleMeds® lists of medications requires that the user have the most up-to-date lists of drugs. Therefore, we wnat to inform you of the following changes to the QTdrugs.org lists:
1. Addition of pilsicainide (on market in Japan) and prothipendyl (on European markets)to the Possible Risk List.
2. Addition of terodiline (Micturin and Mictrol) to the Known Risk (KR) List. This drug has been removed from the market in many countries because of TdP. Because it may still be available in some countries, we have added it to the KR list. Note that the brand Mictrol may contain a different drug (bethanechol) in some countries.
Also, we remind you of the availability of the newly released, free CredibleMeds Mobile Apps:
C
The Apps are synced to the CredibleMeds drugs lists and are therefore always an up-to-date resource for you to search for drugs of interest.
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February 2017 - In This Issue
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Editor: Jan Schiller
Contributors: Alice Lara, Lynn Johnson, William Shiflett, Chelsey Tufts, Corinne Maynes
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Month of February, 2017
Keep Little Hearts Breathing
Kansas City, MO
February 20, 2017
PACES 2017 - Advancing the Field
Celebration, FL
February 23, 2017
8th Annual Guys & Girls Night Out
Glencoe, IL
February 26, 2017
Shopping for SADS Foundation at Charming Charlies
Bowie, MD
February 27-March 2, 2017
Rare Disease Week on Capitol Hill
Washington, DC
May 21, 2017
Gertsberg Memorial 5K
Farmington, CT
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
March 17-19, 2017
Washington, DC
New York, NY
May 10-13, 2017
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