matters of heart

march 2016   
Leading medical experts at the LDSF 2016 Conference

We're delighted that so many leading experts on Loeys-Dietz will be joining us at our 2016 Conference, now just three months away. Here's our line up:
  • Dr. Hal Dietz, Genetics/Cardiology, Johns Hopkins University 
  • Dr. James Black, Vascular Surgery, Johns Hopkins University 
  • Dr. Sarah Bowdin, Genetics, Sick Kids, Canada 
  • Dr. Alison Boyce, Endocrinology, National Institutes of Health 
  • Dr. Ismail El-Hamamsy, Cardiovascular Surgery, Montreal Heart Institute, Canada 
  • Dr. Pamela Frischmeyer-Guerrerio, Allergic Diseases, National Institutes of Health 
  • Dr. Anthony Guerrerio, Pediatric Gastroenterology, Johns Hopkins University 
  • Dr. Joseph Marine, Cardiology, Johns Hopkins University
  • Dr. Paul Sponseller, Orthopedic Surgery, Johns Hopkins University 


An important note on lodging: The LDSF has secured rooms for Friday and Saturday nights at the Marriott Renaissance in Baltimore's Inner Harbor for the rate of $169.00 per night plus tax. We have secured a limited block of rooms that will be filled on a first come first serve basis. Information on how to reserve a room at our discounted rate will be provided after conference registration has been received.
Julie Meyers shares her story

Before we received the official diagnosis of Loeys-Dietz Syndrome (LDS) for Amelia in early June of 2014, at just 5 months old, we were told that it was very likely that is what she had. 

Having received a lot of reports about what Amelia had going on medically, we felt very strongly that we needed to attend the LDSF Conference. We wanted to connect with specialists in LDS that would be at the conference and especially with other families who were traveling the same road we had just started out on.  

It was one of the best decisions we ever made despite the cost to make it happen.  LDS is so rare that until then, we felt very alone. The conference gave us a chance to connect in so many ways and take away new insights, good news for the future of LDS and most importantly, new friends for us as parents and for Amelia!

If you haven't already met Joey+Rory, you should. For their talents, their personal journey, and their generosity. They've decided to use their latest album, "Hymns That Are Important To Us," as a platform to spread awareness about Loeys-Dietz and the LDSF.

If you're lucky enough to have a Cracker Barrel in your area, visit the restaurant and buy a copy. While you're there, take two steps:
  • Let the store manager know about your connection to Loeys-Dietz Syndrome and thank them for supporting the LDSF.
  • Take a picture of yourself with the CD in front of a Cracker Barrel sign and share it with us at or through our Facebook page.

With AmazonSmile, Amazon essentially donates a small portion of sales to the charity of your choice. You sign up once, designate the LDSF as your charity, then remember to shop through smile.Amazon and bingo. Same Amazon store, same Amazon prices, only difference is the donation you're generating. 

To sign up, go to and select the LDSF as the charitable organization to receive donations from eligible purchases.


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