SADS 20th Anniversary Logo







April 2014


April, 2014 - Some Things In This Issue:
Long QT Syndrome, Malaria and International Travel 
 

If you are currently living with Long QT Syndrome (LQTS), it is important to consider your SADS condition and the potential impact of vaccinations and antimalarial medications when traveling to countries where malaria is endemic. Prior to visiting a travel clinic, you should meet with your cardiologist, phairplane-illustration.jpgysician, and/or infectious disease specialist to determine a SADS-friendly strategy and to discuss any potential contraindications if you are traveling to places with a high rate of malaria (e.g., Sub-Saharan Africa, Central Asia, etc.). Anti-malarial medications pose a high risk of QT prolongation, and those with LQTS need to discuss the risks of taking such medications, especially when offered as a prophylaxis (preventive treatment) as opposed to treatment for an active infection. People with LQTS are also strongly encouraged to use insecticide and netting, stay in hotels with mosquito protection, and to wear mosquito-repelling clothing whenever and wherever possible. For more information on malaria and how you can keep yourself safe, read more here or contact Matt at matt@sads.org.

What it means to be a Global Hero

 

You can be a part of 2014 Global Heroes program and raise money for the SADS Foundation!

Applications are open March 10 - April 25.

 

The program honors up to 25 runners from around the world who benefit from medical technology. In seven years, 159 runners representing 23 different countries have been honored. 


Honorees receive two paid entries into the 2013 Medtronic Twin Cities Marathon or the Medtronic TC 10 Mile and a travel package that includes airfare, lodging and meal expenses for the Global Hero and one guest.

To apply or nominate someone to be a Global Hero, visit Global Heroes.  

DEADLINE APPROACHING: Don't forget to have your community apply for the Rural Access to Emergency Devices Grant!

 

The purpose of the Rural Access to Emergency Devices (RAED) Grant Program is to develop community partnerships to purchase automated external defibrillators (AEDs), provide defibrillator and basic life support training, and place AEDs in rural communities with local organizations. All community partnerships composed of local emergency response entities such as community training facilities, local emergency responders, fire and rescue departments, police, community hospitals, and local non-profit and for-profit entities concerned about cardiac arrest survival rates are eligible to apply. Applications are due by April 30thFor more information click here.  

New Drugs Added to the Drugs to Avoid List  

April 14, 2014

Nelfinavir (Viracept) is a drug used for the treatment of HIV/AIDS that has been added to the list of medicines with Conditional Risk of Torsades de Pointes (TdP).  There is substantial evidence that nelfinavir is associated with TdP when taken with other medicines that prolong the QT interval or drugs that block the metabolic breakdown of nelfinavir.

Ivabradine (Procoralan, Coralan, Corlentor, Coraxan, Ivabid, Bradia) is a medicine approved in many countries o utside the US for treatment of angina pectoris (heart pain).  It has been added to the list of drugs with Conditional Risk of Torsades de Pointes.  There is substantial evidence that ivabradine is associated with TdP when taken with other medicines that prolong the QT interval, diuretics or drugs that block the metabolic breakdown of ivabradine, or electrolyte abnormalities (low potassium or low magnesium), which may be induced by co-administration of diuretics.

For patients with congenital long QT syndrome (CLQTS), we recommend that drugs appearing on any of the QTdrugs lists should be avoided, unless no other option is feasible. For this reason, nelfinavir and ivabradine will be included on our list of Drugs to be Avoided by Patients with Congenital Long QT Syndrome.

CredibleMeds relies on charitable contributions and grants to support the website and to maintain the QTdrugs list. Please visit our website by clicking here and become a supporter with your donation.

SADS Safe Schools, Making Your Child's School Environment Safer


The 2014-2015 school year is just around the corner, make sure your child's school environment is safe! Here are a few steps to help ensure your child's safety. 

 

  1. Develop an Individualized School Health Care Plan for your child by taking our care plan to your child's physician, and working with your school health professional(s) using yourrunning-backpack-children.jpg knowledge of your child's condition and your doctor's recommendations. 
  2. To ensure that your child's Individualized School Health Care Plan is in place and working, verify who is responsible for receiving the plan (principal, school nurse), where the care plan is located, who is responsible for implementing the care plan, and how the school trains their staff regarding the existence and implementation of individualized care plans.
  3. Ask the principal what the school's Emergency Medical Plan is, and whether all staff are trained on what it is.
  4. Check to see if the school has an AED, a plan for use of the AED and whether all appropriate staff is trained to use an AED.
  5. Make a plan to ensure that all above recommendations are in place.
 Saving Lives Through Community Outreach and Education

 

In partnership with Stanford University, the University of California - San Francisco, and the Health eHeart Alliance, the SADS Foundation will be participating in the Heart Rhythm Society's Citywide Awareness Campaign, a community education event as part of the Society's 35th Annual Scientific Sessions. The San Francisco Bay Area community will be provided with materials and education on hands-only CPR and how to use AEDs to prevent sudden cardiac death. Community members will also have the opportunity to register for research studies focused on cardiac conditions and health. These types of outreach activities are critical in raising awareness about sudden cardiac arrest and how people can take action to save lives within their community.

 

The event will be held at the Crocker Galleria in San Francisco, California from 10 a.m. to 2 p.m. on Wednesday, May 7th. Email matt@sads.org or call 801.531.0937 for additional details. We hope to see some of you there!

 

 

An Evening for the SADS Foundation

Jan Murphy, Director of Development, Dr. Michael Vincent, and Alice Lara, President and CEO of SADS 

 

The SADS Foundation extends our genuine appreciation to all those who joined us at An Evening for the SADS Foundation Reception at the Ardeo & Bardeo Restaurant in Washington, D.C., before the American College of Cardiologists Conference began.

   

Our reception hosts Board Member Scott Dailard and his daughter Miranda; Dr. Charles Berul of the Children's National Medical Center; Andy Golden, Maryland Ambassador for the SADS Foundation; and Lisa Olson of the aha Group CEO as well as numerous guests  including Board President  

Dr. Michael Ackerman of the Mayo Clinic, Dr. Susan Etheridge of Primary Children's Medical Center, and special guest Founder Emeritus Dr. Michael Vincent all helped us to celebrate the significant successes and mission of the SADS Foundation to serve the critical needs and aspirations of families.

  

A most sincere thank you is sent to everyone who supported this event to help the SADS Foundation take our services to the next level.

American College of Cardiologists Conference

 

President & CEO Alice Lara spreading the word about SADS and the SADS Foundation at China Night sponsored by the Chinese American Heart Association.

This year's American College of Cardiologists Conference was held on March 28 - April 1, in Washington, D.C. It was a weekend of medical education, informative booths and poster presentations as well as meeting and re-connecting with colleagues. President & CEO Alice Lara and Director of Development and Marketing Jan Murphy were pleased to be in attendance at the conference and honored that our board members and scientific advisors including Drs. Susan Etheridge, Charles Berul, Sylvia Priori, Sammy Viskin, Arthur Garson, Jeff Towbin, and Vicki Vetter were speakers spreading awareness about inherited arrhythmias to the medical community. Now, we are looking forward to the Heart Rhythm Society Conference this May in San Francisco, California.

 ECCU 2014: A Celebration of Survival

 

The ECCU conference has developed three days of dynamic sessions devoted to sudden cardiac arrest issues including roadmaps to promote CPR and AED advocacy, ideas for community outreach projects, issues related to sudden cardiac death in the young, and discussions with experts related to post SCA survivors' concerns. Join friends and colleagues for this celebration of survivors and rescuers. For more information, go to  ECCU 2014. Reserve Your Spot Today!

 Vehicle Donation Program 
  
 
Donate your car, boat, truck, RV, Jet Ski or snowmobile to the SADS Foundation and receive a tax deduction. DonationLine has towing agents in all areas of the United States ready to pick up your car donation. Non-Running, junk and salvage cars are also greatly appreciated!

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 click here "Donate Car" to donate online now.  Please have your title in hand when you contact us to donate.

If you have any questions about this process, contact Jan Murphy at Jan@sads.org or 800-STOP-SAD
 Goodbye Carol
  
 
Dear SADS Family,

With a heavy heart I am leaving my position at the SADS Foundation at the end of the month. My time  at SADS has given me amazing opportunities to work with remarkable patient families, volunteers, and health professionals. I am humbled everyday by the dedication of our team, the strength of our families, and the unfailing support from friends of the SADS Foundation. The medical knowledge I have learned will remain with me. In my future career as an educator for Teach for America, I will continue to be a comrade in raising awareness for SADS conditions.

Thank you for everything!
                                           
Warmly,  
Carol
  
 

 
EVENTS
 
Texas Hold Em' 
May 2, 2014 
Folsom, CA 
 
HRS Community Event 
May 7, 2014 
San Francisco, CA 
LaPaglia Memorial Event 
May 10, 2014 
Pittsburgh, PA 
CPR and AED Awareness Week 
June 1-7, 2014
National
 
 
Bike the Drive 
May 25, 2014 
Chicago, IL  
HCM Meeting 
May 30, 2014 
Morristown, NJ
 
  Heart to Heart Conference at the Royal College of
Nursing 
October 18, 2014
Cavendish Square, London 
SADS UK Conference  
May 15, 2014
Kettering Conference Centre, Northampton 

 


Sincerely, 

The SADS Foundation

Alice, Carol,  Christine, Matt, Connie,  Jan, Jenny, Sarah, Grace, David and Brandon