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SADS E-NewsletterMarch 2011
In This Issue
Steevan Mars
Medtronic Global Heroes
Help Stanford Researchers
Volunteer Reporting
Capitol Hill Study
Students Save a Life in Hawaii
Sudden Death "Safety Net" System
Ricky Trietley: Living & Thriving
Research: Cost-Effectiveness of Genetic Testing
SADS 17th Annual No Ball At All
Invite Your Doctor!

March Quick Poll

Upcoming Events

 Walk in Honor of Ricky Trietley - March 27, 2011 - White Sands, NM  

 

Lopynski 5-K Run at Virginia Tech -April 3, 2011 -Blacksburg, VA  

 

Tommy Marren Beef and Beer -April 30, 2011 -Aston, PA  

 

PACES (Pediatric and Congenital Electrophysiology Society) Meeting -May 3, 2011 -San Francisco, CA   

 

HRS Annual Scientific Sessions -May 4-7, 2011 -San Francisco, CA   

 

ARVD Family Seminar -May 14, 2011

 

Cache Miller's 6th Birthday Party 

May 18, 2011 - Jump Around Utah, Salt Lake City  

 

Fundraiser in Memory of Stephanie Mejias -Spring 2011 -Union, NJ   

 

Shannon Kiss "Celebrate Wayne and Conquer SADS" Dinner -June 3, 2011 -Atlanta, GA 

 

Keith L. Young Memorial 5-K Run -June 11, 2011 -Green River, WY    

 

Climb to Conquer SADS -July, 7-10, 2011 -Washington State

 

"Where's Bob?" in NYC -Cubs vs. Mets -September 11, 2011 -New York, New York 

   

"Tri" for Abbey Triathlon in memory of Abbey Wambach -Sep. 24, 2011 -Rockville, SC

 

SADS International Conference -Oct 1-2, 2011 -Atlanta, GA

details coming soon!  


For information about any of these events, or for assistance planning your own special event, contact Laura or call 800-786-7723.

SADS Young Investigator Award

One of two 2010 Award Recipients, Edward Glasscock.

Applications are now being accepted for the 2011 SADS Young Investigator Awards in Cardiac Channelopathy Research. 

Climb 2010-Brian Hoots

Sponsor a climber for the 2011 Annual  

Climb to Conquer SADS.

Contact Laura or call 800-786-7723 to get involved!

Local Network Participation Survey
network
Want to network with other SADS families? Take the survey today!

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Greetings!
Check out the latest from the SADS Foundation!
Steevan Mars: For the Love of Danny

Baby DannyAnother amazing story of love and dedication. Steevan Mars, father of little Danny (pictured), has dedicated his NEW single, "It's Been A Long Time" released on BANDCAMP In honor of his son, Danny, who was born 4 years ago with Long QT Syndrome, a cardiac condition that causes dangerous life threatening arrhythmias. He is donating all proceeds generated from downloads of his songs on Bandcamp to the SADS Foundation.

 

Click here to read Danny's story. 

Medtronic Global Heroes Program

Medtronic is recruiting runners from around the world who have an ICD or pacemaker (doesn't have to be Medtronic brand) to participate in the fifth annual Medtronic Global Heroes program. Up to 25 runners will be selected to receive two paid entries into the Medtronic Twin Cities Marathon or the Medtronic TC 10 Mile, Oct. 2, 2011 in Minnesota. Recipients will receive a travel package that includes airfare for the Global Hero and guest.
Medtronic Global Heroes LogoIn addition to race entry and travel expenses, the Medtronic Foundation will donate $1,000 to a non-profit patient organization that educates and supports people who live with the Global Hero's condition.  Applications are due by April 15, 2011. 

 

Click here to read more. 

It takes just 40 minutes to help researchers at Stanford University better understand the LQTS experience.

Participants Needed: Stanford researchers are looking at the long-term psychological impact of growing up in a family affected by LQTS-and whether genetic testing during childhood increases or lessens that psychological burden. Do you have family members who grew up knowing (as children or teens) that LQTS was in the family? Are they now adults age 18 or older? Please send them this description of the study which includes instructions about how to participate. 

Volunteer Reporting

Telephone

The SADS Foundation has now made it easier to report your volunteer "action" with the automated volunteer hotline.  Just give us a call (800-STOP-SAD) and select the "Volunteer Hotline" (extension 117) any time of day or night and report your activity.   

Thanks for your help!

Capitol Hill Study Shows Importance of Electronic Communications by Constituents

Capitol HillTechnology is quickly advancing and according to a recent study, Communicating with Congress: Perceptions of Citizen Advocacy on Capitol Hill by the Partnership for a More Perfect Union at the Congressional Management Foundation, it is lending citizens a larger voice.  Visiting legislators in person is an ideal situation but how effective are electronic interactions?   

 

This study shows that the content is the most important factor when contacting representatives. By giving a personal message and voicing your opinion, you are leaving a lasting impression. Even further, congressional staff surveyed revealed even facebook messages can leave a positive impact. So, keep up the good work and thank you to all our wonderful advocates for your dedicated efforts this season! 

 

Read more about this study.

Student By-Standers Save a Life in Hawaii
Six college students in Honolulu, Hawaii were honored by City Council on March 16th for their life-saving rescue efforts of a visitor at Chaminade University.  One of the students noticed a visitor, Bobby Command, who collapsed after attending a basketball game on campus.  The chain of command was enacted with one student giving CPR and soon after others joining in, ultimately flagging down and directing the ambulance right to them.  The paramedics immediately administered an AED and transported Command to the local hospital.  We commend these students for their valiant actions! 
  

 

What Does the SADS Foundation Do When There is a Sudden Death?  SADS Family "Safety Net" System

Within hours of being notified of a sudden death of a young person, the SADS Foundation staff immediately reaches out to build a "safety net", where people can find information and answers.

 

Safety NetUpon learning of the death, we initiate contact with the family, the media outlets that have reported it, the schools, universities or location where the tragedy took place. We also contact the Medical Examiner's office in the city or town to inform them of how to appropriately preserve genetic material that may be necessary in determining the cause of death.

 

Working with our scientific advisors and local SADS referral network physicians, we reach out to local physicians, pediatricians, and emergency room staff in the area to provide resources and information on SADS conditions so they can give informed answers when their patients express concern for themselves or their loved ones.

 

We encourage you to let us know when you hear of a sudden death of a young person, so we can provide this important "Safety Net" for the families.  1-800-STOP SAD or sads@sads.org 

 

Read our complete outreach policy. 

Ricky TrietleyNineteen year old Ricky Trietley and his family are making a big difference in their home town of Allegany, New York.  Last week their local paper wrote a story about Ricky and their fundraising and awareness efforts.  Ricky was diagnosed with Long QT Syndrome last summer after he fainted while exercising one day.  Since then he has had an ICD implanted and is attending the Unviersity of Pittsburgh.  The Trietley family has now raised over $4,000 for SADS life-saving programs!

Click here to learn more about the Trietley family. 

 

New Research: Cost-Effectiveness of Genetic Testing in Family Members of Patients With LQTS

DNA 2

From SADS first quarter literature review: research published in the Circulation Cardiovascular Quality and Outcomes looks at the cost-effectiveness of genetic testing in first degree, or immediate relatives of patients with Long QT Syndrome (LQTS).  Often times family members of patients diagnosed with LQTS do not show symptoms but may have inherited the mutation, and thus are potentially at risk.  This study evaluated three strategies for treating asymptomatic (no evident symtpoms) relatives of LQTS patients.  Ultimately, the study shows that genetically testing first degree relatives--especially children of patients diagnosed with LQTS is in fact cost-effective. 

 

Perez MV, Kumarasamy NA, Owens DK, Wang PJ, Hlatky MA.

Circ Cardiovasc Qual Outcomes. 2010 Dec 7. [Epub ahead of print]

PMID: 21139095 [PubMed - as supplied by publisher]

  

Register your family in the SADS Pedigree Project. 

SADS 17th Annual No Ball At All Campaign

No Ball 2011

Check your mailboxes soon for your "No Ball at All" Invitation.  Consider the cost of a charity gala, and help us instead.  There's no fancy party, no showy formal to buy, no babysitter to hire - and best of all, you know your contribution will go directly to the life-saving programs of the SADS Foundation.  To get your invitation, e-mail Laura or call 800-786-7723.  

DoctorsWe're expanding our medical education program and want you to invite your doctor to join the SADS family. We have valuable resources for physicians including access to world experts on SADS conditions, the quarterly review of literature providing the latest research and other information on SADS conditions.  Christine Fontanella, Director of Medical Education, has written a letter to all physicians inviting them to become familiar with what the SADS Foundation has to offer. Choose a letter, personalize it and invite your physician to get to know the SADS Foundation.  

 

 Visit our website to print the letter and share with your physician.   

Sincerely,

Alice, Laura, Christine, Adrienne, Sarah, Amy and Bonnie
The SADS Foundation