The Marfan Blog

#VictoryToday

Dec 2, 2019 by The Marfan Foundation

On December 3, the entire world will be participating in Giving Tuesday. Many people with Marfan and related conditions are supporting The Marfan Foundation because of our impact on their lives. Liam, Peter, and Katie share how the Foundation is helping them achieve #VictoryToday.

Topics: Marfan Awareness, Marfan Community, Living Successfully, Education, giving tuesday

Invaluable Little Moments

May 10, 2019 by Beth Utz

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.

Topics: Marfan Conference, Marfan Community, Loeys Dietz, Education, Annual Conference

Finding Commonality at the Marfan Annual Conference

Mar 11, 2019 by Mike Scribner

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.

Topics: Marfan Conference, Marfan Community

Empowerment Means Saying Goodbye to the Sidelines

Nov 27, 2018 by The Marfan Foundation

Keith has never been terribly outgoing. He’s taller than other kids and wears thick glasses. He does not like the glasses. They’ve always bothered him, but now, as he gets a little older and he gets more questions about them from kids his age, he really wishes he could just wear contacts.

Topics: Marfan Awareness, Marfan Community, Quality of Life

Peace Through Connection

Nov 19, 2018 by The Marfan Foundation

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.

Topics: Marfan Conference, Marfan Community, Research, Quality of Life, Loeys Dietz