matters of heart

august 2015   

A few months ago we asked you to help us assess the number and age range of people with Loeys-Dietz syndrome. This was the first survey of this kind among our community. Thanks to your participation, we received information on 656 people with Loeys-Dietz across 44 states in the U.S. and 17 countries. Read more.

Mo Jurgens, a 20 year old with Loeys-Dietz, has attended every LDSF Conference. When asked why she keeps coming back, here's what she told us:

"I was diagnosed in 2005 with LDS. In 2008 I attended a Marfan's conference where I met a few other kids with LDS-one of them being my good friend, Quentin. The Loeys-Dietz Syndrome Foundation had their first conference in 2012, which included several families, most of whom had kids with LDS. It was a life changing experience." Read more.  

When I was diagnosed with Loeys-Dietz (LDS) in March of 2005, I wanted to know all I could about this new syndrome. Dr. Dietz explained to me that it's a cousin of Marfan (my previous diagnosis).  More information came in August 2005 with the publication of the New England Journal of Medicine article describing LDS.
As I read through the article, one statistic stood out. I'm guessing you know which one I'm talking about - the average lifespan was listed as 27 years.  It just so happened that in August 2005, I was 27, about to turn 28 in October. A thousand questions flooded my thoughts. Does this mean I'm living on borrowed time now? What does this mean for my future? Read more.
"Let's Dance for LDS" in Brooklyn, NY, Sept 13
1:00-4:00 PM at Dance Passion
6221 Bay Parkway
Brooklyn, NY 11223

Live in the New York area and want to support a great cause and have a great time? The Korochik family is hosting "Let's Dance for LDS" in honor of their son Matthew. All proceeds to benefit the LDSF. Learn More

"Abby's Amazing Race" in Marvell, AR, Oct 24
The Kemmer Family will be hosting the second annual "Abby's Amazing Race" 5K and fun run. More information coming soon.


Thanks to Amelia Kasper for her creative fundraising through "Quack for a Cause," a collection of hand-made duct tape bracelets and other items. Amelia has already raised $300 for the LDSF and plans to sell these items online soon. 

If you are interested in fundraising, contact us at
Still not signed up for AmazonSmile?

Signing up for AmazonSmile is easy. Simply go to and select the LDSF as the charitable organization to receive donations from eligible purchases. Amazon will remember your preference. You just need to remember to shop at (we suggest you bookmark it!). From then on, whenever you need anything from Amazon, just browse through AmazonSmile and Amazon will make a donation to the LDSF. Ta-da!


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