matters of heart

january 2015   


It was just ten years ago, in January 2005, that Dr. Hal Dietz, Dr. Bart Loeys, and others first described Loeys-Dietz syndrome in the journal Nature Genetics. 


Lucky for us, that was just the beginning. 


Over the past decade, they and many other experts have been steadfast in their work to better understand the drivers of Loeys-Dietz syndrome (LDS), its affects on patients, and how to effectively manage its impacts. Read more



This month marks the 10th anniversary of the identification of Loeys-Dietz syndrome. It also marks the 3rd anniversary of my daughter Aileen's death from a ruptured aortic aneurysm at the age of 24. Her autopsy revealed LDS type 1 (family genetic testing determined it to be a spontaneous mutation). Until that time, I had no familiarity with connective tissue disorders. Since that time, I've learned a lot. Read more



Save-the-date for fun-filled fundraisers:

  • March 7, "Cross the Finish Line for Caroline," a 5K in Bossier City, Louisiana
  • May 2, TBA, a concert near Nashville, Tennessee
  • June 20, "Clays for Caslin," skeet shooting in Hudson, Wisconsin



$15,000 towards the LDS registry!

Thanks to your generous contributions to our end-of-year campaign, we raised $15,000 to help us identify the best registry for Loeys-Dietz syndrome. Though an ambitious undertaking, helping set up a registry is the most important step we can take as a Foundation to help advance research that can make a real difference to people living with Loeys-Dietz syndrome. 

Happy Birthday, Amelia! 

A very Happy Birthday to Amelia, who just turned one! And thank you to her family who used her birthday party as an opportunity to help raise funds for the LDSF. With money still coming in, they raised $2500 to help further the mission of the Foundation. Thank you, Meyers family, for Taking Heart!


If you are interested in fundraising, contact us at

Welzoo, AmazonSmile, iGive & Bravelets

Surfing the internet? Ordering off Amazon? Looking for some unique jewelry? Did you know you can help generate funds for the LDSF with things you already do? Take a moment to see how you can help us raise funds everyday. Learn how to help the LDSF.


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