The Marfan Blog

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

Lifesaving Education

Nov 13, 2018 by The Marfan Foundation

 

There are few things stronger than a mother’s intuition. The strength of this “knowing” is so deep, in fact, that it could be life-saving. That was certainly the case with Jayla and her mom, Becky. 

Topics: Marfan Community, Marfan Awareness, Quality of Life

We Found Our Family

Nov 9, 2018 by The Marfan Foundation

 

For most people, family is the first group of people we know and trust. Newborn babies know their mothers by sound. Kids instinctively look to the people they trust for social cues. In a lot of cases, this tight circle is the family into which a child is born. In other cases, family is created over time with friends and neighbors who love and support one another like any family. 

 

Topics: Marfan Community, Marfan Awareness, Quality of Life

Globetrotting When It’s Hard to Trot

Oct 22, 2018 by Dawn Knowles

I’ve always dreamed about exploring new places, but in my fantasy explorations, my body is strong and capable and I can do whatever I want. That, however, is not my reality.

Jim Cavan: The Journey to Backpack Health

Sep 24, 2018 by Jim Cavan

Maggie, with her mom, Jennifer, at the Foundation's Boston Walk for Victory in June.


As anyone with a rare disease will tell you, the health journey is extremely nuanced and complex.  It’s difficult enough having to deal with the symptoms themselves, but managing one’s care makes it that much more challenging.

Topics: Healthcare Management, Medical Management, Tips, Research, Marfan Community