Family Creates Tournament to Raise Awareness Following Loss of Husband and Son to Loeys-Dietz Syndrome
For father and son Greg and Trent Hall, cornhole was a family...
Blog Category: Community
Ciccariello Family Statement on the Passing of Dr. Reed Pyeritz
The late Priscilla Ciccariello was the original "Marfan Mom" and her mission to protect her family...
From Lived Experience to Healthcare Professional
How community members are shaping the future of care. For many in the Marfan Foundation...
How a Marfan Foundation Conference Led to a Cross-Country Forever Friendship: Jennie & Danielle’s Story
Jennie Aucoin traveled to the Marfan Foundation Conference in Atlanta in July of...
Ready, Set, Transition: Helping Teens Step into Adult Care
For families navigating life with a genetic aortic and vascular condition, the move from pediatric...
After 10 Operations, Teenager Olivia Nguyen Pays It Forward by Volunteering and Raising Awareness of Loeys-Dietz Syndrome
Hoan and Danette Nguyen remember being confused when their daughter, Olivia, “suddenly...
Thank You VEDS Community: Annual Houston VEDS Party & Walk for Victory
A gratitude-filled reflection from VEDS Movement Director Ryan Rodarmer, MS Ryan Rodarmer,...
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