SADS 20th Anniversary Logo









  October 2013

Click Here to Register Now!
Win a Quilt for the Winter Season!

 

Donate $2 and you will be entered in a drawing to win this beautiful hand-made quilt! You can enter multiple times, each increment of $2 will be counted as a separate entry. The winner will be announced at the SADS Annual International Conference on November 3, 2013; and the winner will receive the quilt by December 21st! Tickets are going fast, so enter today!

This beautiful hand-made quilt has been donated by Patty Vannoy of Fairfield Medical Center in Lancaster, Ohio. 

The finished quilt measures 88" x 102" and will fit a twin through queen sized American bed mattress. It is made from cotton fabrics with cotton batting. The quilting is done in a vine pattern with hearts interspersed throughout. 
 
The Fairfield Medical Center staff has exceeded expectations as partners in the 2013 International Conference and in the Heart Safe Schools Program. This lovely quilt is further proof of their commitment, both personally and professionally, to protecting families from sudden cardiac arrest.

Click here to enter the raffle: 
Interested in Becoming a SADS Ambassador?

 

This highly rewarding volunteer position is accepting new applicants! This year's Ambassador training will be held at the SADS International Conference on November 1, in Columbus, Ohio. This training is for our best and brightest volunteers who have a little more time to spend raising awareness, offering support to other SADS Families, and hosting fundraisers. The training will cover all you need to know to provide SADS information to your community locally and nationally. If you are new to the SADS Foundation, but still want to volunteer, consider

business_people3.jpgattending SADS 101, held right before the Ambassador training which will cover all the basics of SADS conditions. This is also a great refresher if you want to know the updated basics about SADS conditions.

 

We look forward to seeing you at the conference and seeing our team of Ambassadors grow with skilled and dedicated volunteers!  

 

For more information about Ambassadors click here. To register for the SADS Conference click here.



SADS Hong Kong Event
 
APHRS 2013 (The International Cardio Rhythm Conference) was held in Hong Kong from October 3-6. The Foundation also co-organized a public forum on October 6 targeting 400 public audiences with the theme of  "What is SADS". Dr. Peter Schwartz and Dr. Silvia Priori came to Hong Kong to attend APHRS.
SADS Insurance Study Still Seeking Participants!

The American and Canadian SADS Foundations are co-sponsoring a study of insurance coverage for genetic testing. This study will aim to detail the disparities in insurance coverage for genetic testing in both America and Canada.

 

What has your experience been when applying for Insurance Coverage of any kind since you or your family member have been diagnosed with a Sudden Arrhythmic Death Syndrome such as Long QT Syndrome, ARVC, Brugada Syndrome,  or CPVT?


A survey to explore this question has been developed by researchers who are hoping to learn more about the experiences of families and individuals when applying for insurance coverage in Canada and the United States.

 

Click here to participate or learn more!

NYU Family Seminar: November 23

Attention all East Coast SADS Families! The SADS Foundation is partnering again with NYU Langone Medical Center's Cardiac and Vascular Genetics Program to bring you another informative family seminar. This year's seminar will cover all of the most recent updates in the treatment of channelopathies. Breaking news and the future of treatments also will be covered, a guided meditation program will be held, and a CPR class also will be offered for the first 30 people who sign up for it! If you, or someone in your family has a SADS condition, you will not want to miss this opportunity to hear the latest information as well as meet other families in your area who are traveling your same path.

 

 Click here to find out more and register!

Sudden Cardiac Arrest Awareness Month: Ohio HB 180

 

October is Sudden Cardiac Arrest Awareness Month and the SADS Foundation is a significant partner in leading the way to educate medical professionals and families about SADS conditions. Please support us as we continue this mission.

 

During this year's 7th Annual International SADS Foundation Conference, the SADS Foundation will stand with Representative Connie Pillich of Ohio, Co-founder Darren Sudman of Simon's Fund, and many others to announce the submission of HB 180 (Sudden Cardiac Arrest /SCA/Prevention Act) to the State House of Representatives.

 

HB180 works like the concussion law and requires parent and student education, coach participation in annual training courses, and medical clearance of student athletes with signs of an SCA. These actions not only ensure that necessary steps are taken to prevent sudden death, but also make certain that people with heart conditions are given proper treatment. This law is not a stand-alone law.  It is language that is being added to an existing law that regulates "Community Schools." This bill already is pending in the states of Indiana, New Jersey, Massachusetts, Oklahoma, Michigan, and Ohio.  The next states in line for the bill to be introduces include Tennessee and North Carolina with Florida, Georgia, and Delaware close behind.

 

According to the Center of Disease Control - Morbidity and Mortality Weekly Report, approximately 295,000 Americans die suddenly and unexpectedly due to cardiac arrhythmias each year in the United States-more than 4,000 of them are young people. These deaths total more than lung cancer, breast cancer, and AIDS combined! The astounding numbers demonstrate the need for HB 180. By educating parents and coaches about the warning signs of Sudden Cardiac Arrest and teaching CPR to all associated personnel, we will save young lives throughout the United States. 

SADS 20th Anniversary Logo

 

Get a Copy of the 2012 Conference DVD

 
Price Reduced! The 2012 Conference DVD is now available for $25.00. This informative DVD contains the best lectures from the 2012 conference. Order yours today to prepare for this year's conference!
Click here to order.
 

Send Us Your Stories!

Do You Have a Recent Emergency Room Experience to Share?

 

Researchers want to better understand the emergency room experiences of people living with Long QT Syndrome and their thoughts and feelings on the medical care received! Adults ages 18 years or older with a diagnosis of Long QT Syndrome (LQTS) or who have a child with LQTS, who have sought help in the emergency room in the past year are invited to participate in an online survey being conducted by researchers at the Philadelphia College of Osteopathic Medicine in collaboration with the Children's Hospital of Philadelphia. The 30 minute survey can be completed here. Participants will receive a $10 gift card when the survey is completed. For any study questions please contact the research team at lqtstudies@pcom.edu

Updates Made to QTdrugs List 

10/14/2013

 

 CredibleMeds

Added to "Possible risk of torsades de pointes":

  • Bortezomib (Velcade, Bortecad), a proteasome inhibitor for multiple myeloma and mantle cell lymphoma
  • Bosutinib (Bosulif), a tyrosine kinase inhibitor for Ph+ chronic       myelogenous leukemia
  • Crizotinib (Xalkori), a kinase inhibitor for non-small cell lung cancer
  • Dasatinib (Sprycel), a tyrosine kinase inhibitor for leukemia
  • Pazopanib (Votrient), a tyrosine kinase inhibitor for renal cell cancer and sarcoma
  • Sorafenib (Nexavar), a tyrosine kinase inhibitor for kidney or liver cancer
  • Toremifene (Fareston), an estrogen agonist/antagonist for metastatic breast cancer
  • Vemurafenib (Zelboraf), a B-Raf kinase inhibitor for melanoma

For patients with congenital long QT syndrome (CLQTS), we recommend that, unless no other option is feasible, drugs on any of the QTdrugs lists should be avoided.

 

AZCERT.org is now CredibleMedsTM

 

 

 

 

Updates Made to Brugada Drugs List 

10/14/2013

 

Added to Brugada Drugs to Avoid:

  • The drug Lamotrigine (an anti-epileptic drug but also used in depression and bi-polar disorders) has been added to the preferably avoid list with a class 2B recommendation. This recommendation follows recent reports in which it appears that Lamotrigine can introduce Brugada syndrome like ECG changes and can alter the results of provocation tests. 
  • Lamotrigine has been added to the patient letters available in many languages. You can print the updated patient letter from http://www.brugadadrugs.org/patient-letter/ and provide it to your patients or health care professionals.

 To read more, visit http://www.BrugadaDrugs.org

SADS UK Heart to Heart Conference

Royal College of Pathologists, 2 Carlton House Terrace, London SW1Y 5AF

 
Interested in learning more about SADS conditions, but live in the UK? Join SADS UK for their Heart to Heart Conference! 
 
Where? 
Royal College of Pathologists, 2 Carlton House Terrace, London SW1Y 5AF
 
When? Saturday 19th October 2013, 9.30am 
 
Why? Sudden Arrhythmic Death is caused by a range of cardiac conditions which can also affect children and young people. 
The Heart to Heart Conference provides important information about this.

Who should attend? The conference is attended by medical professionals, personnel working in the emergency services, SADS UK members and people interested in learning more about inherited cardiac conditions that can affect a person of any age.
  • Key speaker:  Dr Pier Lambiase, Consultant Cardiologist,  Heart Hospital, London 
    Delegates �20
 
Contact SADS UK for registration form:
Email: info@sadsuk.org
Tel: 01277 811215


November 1-3
7th International Conference
Columbus, OH
Upcoming Events
    
November 2
All for Al
Chicago, IL


 November 3

Long QT Benefit and 

Awareness Acoustic Concert

Philadelphia, PA

November 23
NYU Seminar
New York, NY


November 30
Brittany's Trees
Carol Stream, IL



Sincerely, 

The SADS Foundation

Alice, Anne, Carol, Sylvie, Christine, Jan, Rachel, Sarah, Grace, David and Brandon

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