At a time when technology infuses our lives in almost every way, it is hard to imagine that the personal computer was invented only 35 years ago. Around that same time, a group of concerned moms and physicians were rallying around a rare condition called Marfan syndrome. Their goal was learning as much as they could to spread awareness. After forming a nonprofit, known today as The Marfan Foundation, they started bringing people together for an annual conference. The first Marfan Annual Conference was held 35 years ago this year.
Connection is at the core of the Snyder family’s resilience. Through a combination of close family connections and connections to the right medical care at the right time, this family of four is successfully navigating Loeys-Dietz syndrome times 3.