matters of heart

june 2015   

Take charge and track your heart and arteries!


Tracking the dimensions of the aorta and key arteries can be life saving for people with Loeys-Dietz syndrome. That's because many of the risks associated with Loeys-Dietz lie on aneurysmal disease or dissections. Tracking these over time can help you and your doctor decide on medications and timely interventions.


The LDSF is happy to provide this LDSF Tracking Tool to help patients keep track of important data from their cardiovascular imaging, including echocardiograms, MRAs, and CTAs. Print this form, fill it out with your doctor every time you go for an imaging study, and make sure to discuss it regularly with your doctors.


On June 24-26, 2016, we will be hosting our fourth biennial conference in Baltimore, Maryland. 
Our conference planning committee is hard at work lining up speakers, new discussions sessions, and new ways for us to learn and interact during our days together.

So mark you calendars and be on the lookout for further details on what promises to be another great conference!

Our little Hero.  Caslin is going to be 15 this May. Through these last 15 years there have been many ups and downs, scares and joys for us as parents. However, Caslin has always been our rock.  She has not once ever been upset about a doctor's appointment or even an upcoming surgery. Not to say that she has never been apprehensive about a surgery, we are sure she has, but she has always had that attitude of "Once I get the surgery and heal up, just think of what else I can do!"  Read more.


Come one, come all, for a fun filled day of shooting, door prizes and silent auction items!


Game Unlimited 871 County Road E, Hudson, Wisconsin



Saturday, June 20, noon to 6 PM Shooting starts anytime you are ready to head out on the course


Round of clays costs $25. For every clay you break, get a raffle ticket for your choice for a door prize. Sub-gauges get additional tickets. (Ten ticket minimum will be handed out.)


Other highlights:

  • Silent auction items ranging from pheasant hunts in Iowa to fishing trips in Canada
  • Enter to win a $30.00 meat tray ($2 tickets) and a $2500.00 AR-15 ($20 ticket)
  • All-day cook out 

For more information, see Clays for Caslin on Facebook or contact Mary at mary.kasten@loeysdietz.orgCan't attend but would still like to support the cause? You can do that on JustGiveThanks for Taking Heart!


We couldn't be happier to thank so many families and individual for their creative and generous efforts to support the LDSF. 


Regina Korochik raised over $2500 with her 2nd annual Coney Island ticket fundraiser.


And together, we raised more than $6,500 through four CrowdRise fundraisers:

  • Memorial gifts in honor of Aileen Cheng's 28th birthday.
  • Cara Graves's Move Your Feet for Loeys-Dietz (MYFLD) run in honor of her son, Drew
  • Kelly Netherton's two 5K's for Loeys-Dietz in memory of her father-in-law, Ray, and in honor of her husband, Chris, her siblings-in-law, Aaron and Jen, and her nephew, Eric
  • Julie & Chris Wilson's  MYFLD Pittsburgh Marathon relay in honor of their son, Connor

We are thankful for each of these events and their wonderful friends and family members who supported them.

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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