SADS 20th Anniversary Logo
June, 2013
In Memory of Danny Mauriello
 

Thank you to everyone who has donated to the SADS Foundation in memory of Daniel Matthew Mauriello. We were profoundly sad to hear of his passing and the board and staff of the SADS Foundation sends our sincerest condolences to Danny's wonderful family, Stephen, Lurdes, and Robby. We have been very touched by the outpouring of support and donations we have received in his name, and we hope this support is some comfort to Danny's family.

 

To read about Danny click here.            


A global celebration of patients

contributing to community

While medical technology improves the life of one person at a time, it also creates a social impact that reaches far beyond one patient.

The Bakken Invitation celebrates and rewards those who are giving back with their "extra life."

Medtronic will honor 10 inspirational individuals with a $20,000 charitable grant to their cause, and a celebration event in Hawaii.

Apply or nominate someone today
at LiveOnGiveOn.org

Application Deadline June 28

Watch the video on mobile devices

� 2013 Medtronic, Inc.


Thank you Shannon! 
 
The SADS Foundation owes a big thanks to our longtime volunteer Shannon Kiss for her very successful Celebrate Wayne and Conquer SADS event that took place on June 1st! This annual event raised over $7000 for us this year! Participants got to enjoy great live music, an auction, and yummy food.
 

 

 

 

Shannon also organized her own Climb up   Georgia's Stone Mountain. She and about twenty people decorated a SADS flag and enjoyed a lovely walk up. Thank you to Shannon and everyone in Atlanta who participated and donated!

Thank You to Our No Ball Donors!

Thank you to everyone who has donated for our No Ball at All!  The SADS Foundation hopes you have appreciated your evenings in. 

 

There's still time to donate!  Send in your No Ball contribution all year long - since this is a non-event, we don't have a donation deadline. 


To participate, click here:

https://www.sads.org/Donate/Donate-No-Ball-At-All 

 

ICD Sports Survey

Many SADS Patients have participated in the ICD sports survey over they years, the study is still continuing, but they recently published some results in Circulation.

 

Three-hundred and seventy-two individuals, age 10 to 60, were followed for an average of two and a half years. The largest groups were people with the Long QT Syndrome and Hypertrophic Cardiomyopathy.  People with other forms of cardiomyopathies and other electrical abnormalities, as well as those with a history of heart attack those with congenital heart disease, were also included. The most common sports were running, basketball, and soccer.  There were no occurrences of death or resuscitated cardiac arrest, or failure of the ICD to terminate an arrhythmia, or arrhythmia- or shock-related injury, during sports. Shocks were not uncommon--there were 49 shocks in 37 participants (10% of the study population) during sports, 39 shocks in 29 participants (8%) during other physical activity, and 33 shocks in 24 participants (6%) which occurred at rest. 

ICD

 

As discussed in detail in the "discussion" section of the published paper, these results do not imply that it's safe for every person with an ICD to do any sport.  These results do suggest that many athletes can participate safely, and that the decision to return to play after an ICD should be made together between a patient and his or her doctor based on that person's individual situation and current recommendations. 

 

The full manuscript can be found at:

http://circ.ahajournals.org/content/127/20/2021.full.html?ijkey=mcOWjpGzVPJdZz0&keytype=ref

 

The study is still ongoing, in order to look at longer-term outcomes, and to look in more detail at some of the different types of patients enrolled, and new people are still being enrolled.  All information is kept strictly confidential.  For information, please contact ICDSports.Registry@yale.edu  or 866-207-9813.

Ambassadors are online!

Next training at the 7th International SADS Conference

November 1-3, 2013  in Columbus, Ohio

 

Our new Ambassadors who were certified at our last training are now listed on our website! Click here to find an Ambassador in your area and connect with them! If you are interested in becoming an Ambassador yourself, the next training will be offered at our International Conference in November in Columbus, Ohio. Please register today to get a spot in this training program which will prepare you to make a huge difference in your community and you will save lives along with the SADS Foundation.  

DNA Magnifier

New Gene Patent Ruling by Supreme Court

 
Earlier in June the Supreme Court ruled that there cannot be patents on human genes. The court also broadly affirmed the eligibility of patent protection for synthetic DNA and underscored the importance of methods patents for the development of genetic tests.

With regards to the BRCA (or "Breast Cancer gene")"Myriad did not create anything," Justice Clarence Thomas wrote for the court. "To be sure, it found an important and useful gene, but separating that gene from its surrounding genetic material is not an act of invention."

This ruling will affect genetic testing companies, and SADS patients can expect to see more genetic testing companies offering testing for SADS conditions. Prices for genetic testing should come down due to this ruling. There are concerns that this might inhibit companies from investing in further genetic research, however the protection for patenting certain methods that companies develop should allow them to continue to protect their intellectual property.  

Physician Referral Network is Live!

 

Are you looking for a second opinion or a good electrophysiologist for your family members in another state? The SADS Physician Referral Network is on the web a ready for you to search it! Go on and make sure your favorite EP or Cardiologist is listed. If you cannot find someone in your area, you can always call the SADS Foundation and talk to a real person who can help you find another option for a physician. If you are a physician, or if your physician is not listed- contact Christine Rice, Director of Medical Information to get the survey to be included on the list! Or click here. 



June 27-28

NASN: National Association of 

School Nurse Conference

Orlando, FL

Upcoming Events

 

 

 
June 29 
We Have Heart Event
Support Group
Encino, CA



July 21 
Take Heart San Diego-Long QT Families & Kids Support Group
San Diego, CA


July 21
SADS Charity Booth
in honor of Christie Tososky
Saratoga, NY




July 22 
Golf Tournament in 
Memory of Ryan Weidler
Norristown, PA



November 1-3
7th International Conference
Columbus, OH



Sincerely, 

The SADS Foundation

Alice, Amy, Anne, Carol, Sylvie, Christine, Kate, Rachel, Sarah, and Brandon

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