“And There My Life Began”: Trip of a Lifetime Leads to Conference, Loeys-Dietz Diagnosis
After a lifetime of medical issues that were at first unexplainable, then eventually labeled...
Blog Category: Related Conditions
Nick’s Journey in Honor of Connor’s Big Heart
On the morning of December 3, 2020, Nick Metz, a 16-year-old in California, was schooling from...
Stronger Together
A reflection from The VEDS Movement as The Marfan Foundation approaches its 40-year...
Suffering in Silence No More
Content Warning: This article will discuss a specific person’s experiences with suicidal...
Jimmy’s Magic Turtle
Cynthia De Boer’s nephew, Jimmy, was born with a very severe form of Marfan syndrome (known as...
Invaluable Little Moments
At a time when technology infuses our lives in almost every way, it is hard to imagine that the...
Peace Through Connection
Connection is at the core of the Snyder family’s resilience. Through a combination of close...
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