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.
The diagnosis of a potentially life-threatening genetic disorder like Marfan syndrome, Loeys Dietz, or Ehlers Danlos can be hard to accept. With it comes questions, anger, depression, insecurities, and uncertainties, most of which can be hard to overcome without the proper resources and individuals who understand what you're going through both physically and mentally.
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.
Ashley Burks was 23 when her life changed. That year, 2005, she excitedly attended the Marfan Foundation’s Annual Conference in St. Louis. Upon arrival she was overwhelmed with emotion—for the first time in her life she saw other women who looked like her! Lean and lanky with long faces like hers, they looked like family. And as she got to know them, she was overjoyed that they had Marfan syndrome like she did, and they understood what she had gone through in her life.
The Marfan Foundation’s Teen Council is a force to be reckoned with now. And they are clearly our future movers and shakers. This group of teens – who either have Marfan or a related disorder or have a sibling who is affected – is the voice of our adolescent community. Their primary focus is planning for the annual conference each summer; however, plans are underway for even greater involvement throughout the year.
Topics: Marfan Conference