Matters of Heart: July 2018

Have you wondered or been many people have Loeys-Dietz syndrome? 

We would like to start answering this question and need your help. Please participate in the attached survey to help us understand how many individuals have LDS and where they live. There is a US version and an International version. This will also help us be able to make local connections!

Please take a few minutes to answer some brief questions about your family: 

LDS population survey: US version

LDS population survey: International Version 

Conference 2018 Update

Thank you to everyone who participated in our 2018 Biennial Education Conference! It was a great weekend filled with much learning, laughter, inspiration...and quite a few excellent eighties dance moves!

We are so grateful for everyone who traveled to Baltimore to share their stories and wisdom. An incredible thank you to the conference committee for once again creating an incredible itinerary and atmosphere. (As always, if anyone is interested in joining this awesome group of planners, please The Conference in numbers:

  • 211 participants, including 62 kids and teens 

  • >50 families

  • 22 medical expert presenters

  • 6 countries represented

Stay tuned for youtube videos of conference presentations.


Heart of Gold Award

During Conference, the LDSF presented our "Heart of Gold" award to the Kasper family (Mike, Nikki, Amelia and Cash). They are instrumental in all the success of Chicagoland's local initiatives for fundraising and community. Heart-warming in their dedication to community and awareness through their annual tree-decoration campaign. And, inspiring in their philanthropic giving to support Dr. Dietz's LDS research initiatives at Johns Hopkins. We are humbled and grateful for their Hearts of Gold in furthering the mission of the LDSF. Congratulations and thank you to the Kasper family!

Thanks for the memories! 'Til Conference 2020!!

A tremendous  THANK YOU!  to all our incredible and generous donors. It's through your support that we are able to meet our goal to support research.