IN THIS ISSUE:
SALE!
SADS Foundation Holiday Campaign
20th Anniversary Campaign
Meet Heidi Owen!
Insurance Assistance
Raising Funds in Creative Ways!
Genetic Counseling Essential
SADS Foundation Top-Rated Status
Brittany's Trees
Quick Poll Results
Quilt Drawing Winner!
Donate Your Vehicle to SADS!

UPCOMING EVENTS:

Medical Education Seminar  January 6, 2012 -Sacramento, CA 

 

2nd Annual Texas Hold 'Em Tournament and Benefit Dinner in Memory of Race Salazar
January 7, 2012 -Folsom, CA

 

NIH Meetings -January 6, 2012 -Washington, D.C.

 

Parent Heart Watch Annual Meeting -January 13-15, 2012 -New Orleans, LA    

 

SADS Medical Education Seminar -February 9, 2012 -Cleveland, OH

 

Community Awareness & Education Event -February 10, 2012 -Lancaster, OH

 

Annual Jump-a-thon -February 14, 2012 -Dallas, TX

 

16th Annual CHOP "Update on Pediatric and Congenital Cardiovascular Disease" -February 22-26, 2012 -Orlando, FL

 

PACES Pre-HRS Symposium: "Sudden Cardiac Death & the Rest of the Family" -May 8, 2012 -Boston, MA

 

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



If you're looking for a meaningful holiday gift for your friends and loved ones, consider a gift to the SADS Foundation.  This life-saving gift will be acknowledged with a beautiful card to the recipient, and is 100% tax deductible.
utah 
The SADS Foundation 6th International Conference
October 13-14, 2012 
Salt Lake City, Utah 


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Greetings! 

Here's the latest news from the SADS Foundation! 

Check out the newly discounted items in the SADS Store!  These beautiful note cards are now 20% off and can be purchased in packs of five or ten. 
Note Card
Photographs donated by Mike Flaherty who lost both his dad and sister to Long QT
Note Card












 

 

Organize 2012 in style with the SADS Foundation monthly planner, now on sale for just $4!  Hurry, while supplies last!
Family TreeDon't forget!  We are continuing our holiday campaign this year and asking families to take advantage of precious time with their loved ones over the next couple of months to look over and discuss information about their family pedigree and the SADS condition that has been identified.  To make this process simple, we have developed a Pedigree Kit that includes a brief pedigree questionnaire, information about the importance of proper screening for SADS conditions, a genetic testing fact sheet and tips on how to get your family screened and safe!
If you would like a Pedigree Kit shipped to you for free please click here or contact Anne Maurer at Anne@sads.org.
Next month we will be launching an exciting campaign with activities planned throughout the year in celebration of the 20 anniversary of the SADS Foundation.  To kick it off we're gathering stories to add to the collection featured on the SADS website.  Stay tuned for more details about the 20th anniversary campaign.  But in the meantime you can help us get ready by sharing your story today! Tell your experience living and thriving with a SADS condition or write a story in memory of someone affected by SADS.  We can't wait to hear from you!

 

Click here to read some of the recent heartwarming stories we've received.  If you have any questions or would like help writing your story, contact Anne Maurer at Anne@sads.org or  800-STOP-SAD.
If you've traveled to the Mayo Clinic to visit Dr. Ackerman recently you might already know this special woman, Heidi Owen. Heidi has been athletic her entire life, having competed for the University of Minnesota Track and Field team as a student.  It was during those college years that she survived a cardiac arrest and was diagnosed with Long QT Syndrome.  Upon her diagnosis, she was also implanted with an ICD.  Since  receiving her ICD, Heidi remains an active athlete and has completed two marathons!  Her most recent marathon was the Medtronic Global Heros Marathon in Minneapolis, Minnesota this past October with her sister, Heather Krenke.

"My sister Heather is not only my running buddy, but my best buddy!  Heather has supported me through some of the most challenging times of my life.  Not only do we share the same Long QT diagnosis, but she saved my life by starting CPR when I had my first ever Long QT triggered event.  Running with my sister in the race was a total celebration of life and how blessed we have been.  The Global Heroes experience was truly amazing and I was lucky enough to share it with my hero, my sister Heather. "

The Global Heroes program recognizes runners from around the world who have a medical device to treat conditions such as SADS conditions.   In addition to providing race entry and travel expenses, the Medtronic Foundation donates $1,000 in honor of each runner to a non-profit patient organization that educates and supports people who live with the Global Hero's condition.  Heidi graciously selected the SADS Foundation to receive the $1,000 donation. 


A special thanks to Heidi and Heather for their dedication and support!   You can read more about Heidi and her sister on the SADS "living and thriving" healing wall.  If you're at the Mayo Clinic sometime soon, be sure to tell Heidi thanks on behalf of the SADS Foundation!  
The SADS Foundation is aware of the challenges you sometimes have obtaining health insurance and getting insurance to cover AEDs and genetic testing. This problem has come up more frequently over the last 6 months and we are concerned. The SADS Foundation actively supports any legislation that makes insurance easier to obtain for our patients and increases benefits and reimbursements. We are also pleased to be sponsoring an upcoming study of the insurance system in the US and Canada. Please stay tuned for further details and how you can help!

If you have a specific concern about insurance, or want to share tips and advice for others, please contact Anne at Anne@sads.org or 800-STOP-SAD.
LeeThe Ciciarelli family recently held a "milk & cookies" party in which they asked their friends and family to join them for milk in cookies in return for a contribution to the SADS Foundation.  As you know, every dollar raised for the SADS Foundation goes to support our live saving programs, contributions of any size help us continue our mission.  So, this year, why not get creative in your fundraising efforts?  Contact Laura at Laura@sads.org or 800-STOP-SAD for more ideas! 
Genetic Counseling Essential to Understanding SADS Conditions
Getting a SADS diagnosis, or finding you're at risk for one, is a confusing and often scary experience, but genetic counselors are specifically trained to support and educate your family through the process. Genetic counselors' role in the evaluation of SADS conditions is to carefully review and document your personal and family history, discuss how a condition is inherited in a family, and explain the process and potential implications of genetic testing. Meeting with a genetic counselor does not mean you automatically have genetic testing; rather the meeting gives you the opportunity to learn and decide whether genetic testing is right for you. The process of genetic counseling involves creating a 3-generation family tree for you and your medical providers, which results in a better understanding of how the SADS condition may be inherited in your family and identifies which other relatives may be at risk.  Your genetic counselor will also give you recommendations, based on your family history and/or genetic test results, for screening tests that will help protect your health.

Several cardiology organizations recommend genetic counseling for all patients and relatives with familial heart diseases which improves insurance coverage for genetic counseling and testing. In October 2011, Cigna released a progressive policy update that requires genetic counseling prior to genetic testing for long QT syndrome.  This new policy emphasizes the importance of a careful discussion about the genetic testing process that helps families understand what test results will mean in terms of diagnosis, screening and treatment, and implications for the rest of the family.

A growing number of genetic counselors are specializing in cardiovascular disease and are experts in SADS conditions. Visit the National Society of Genetic Counselors site (www.nsgc.org) to find a cardiac genetic counselor in your area, or schedule an appointment for genetic counseling via telephone at www.informedDNA.com or 800-975-4819.  Written by SADS Scientific Advisory Board member, Heather MacLeod, M.S. G.C. 
Great Nonprofits.org
The SADS Foundation has received the highest ranking status on GreatNonprofits.org and we owe it all to you!  Thank you for taking the time to post a review for the SADS Foundation on GreatNonprofits.org.  Click here to read our reviews and post your own, if you haven't already!
Brittany's Trees
The day after Thanksgiving was bustling in Carol Stream, IL this year.  Brittany's Trees organizer Jim Guthrie wrote "we wanted to give you a heads up that we surpassed our goal of 1,000 trees and Brittany's Story was presented on the Fox noon news show on Friday after Thanksgiving!"  Click here to watch the Fox news clip.  We want to give our Carol Stream friends the news that your dedication, commitment and perseverance inspired a Texas philanthropist to add an additional $1,000 to your total raised for the SADS Foundation!  Congratulations to all.

You can host a Brittany's Trees in your community in 2012.  As part of our 20th Anniversary, we'd love to have 20 communities involved.  Contact Laura to ask how: Laura@sads.org or 800-STOP SAD.
November Quick Poll Results: Drugs-to-Avoid List
Thank you to everyone who participated in last month's quick poll about the drugs-to-avoid list.  We heard from many of you about your experiences with the list; here are some of the quick poll results: 
      • ~92% of participants reported checking the list for updates 1-2 times/year
      • ~54% of participants reported having been prescribed a medication on the list of drugs to avoid 
      • most participants reported the list as being helpful, but are also interested in a list of medications ACCEPTABLE for patients with LQTS/BrS to use.

If you have any questions about the list of drugs-to-avoid or this poll, please do not hesitate to contact Anne Maurer at Anne@sads.org or 800-STOP-SAD.  Also, it's not too late to share your story about the drugs-to-avoid list, just click here. 

Quilt Drawing Winner: Nora Lambert
Dr. Vincent with Nora Lambert at the SADS 5th International Conference 
Congratulations to Nora Lambert of New Orleans, LA for winning this beautiful hand made quilt.  Linda Dellinger presented the quilt to the SADS Foundation at the 5th International SADS Foundation Conference in Atlanta, Georgia.  Thank you to everyone for your participation in the quilt drawing, and be sure to stay tuned for future drawings! 
car Did you know the SADS Foundation has a vehicle donation program?  The SADS Foundation has teamed up with Donation Line, LLC to create an effortless process (you don't have to do anything but call--they do all the work!) for donating vehicles, and it's 100% tax-deductible!

It's a perfect way to get rid of the junker in your driveway and support our cause at the same time.  Click here for more information about the SADS vehicle donation program.

Sincerely,

 

Alice, Laura, Christine, Anne, Sarah, Adrienne, Amy and Brandon

The SADS Foundation