The Marfan Blog

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

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

A Make-Over Because of the Marfan Annual Conference

May 26, 2018 by Auburn Ponder Anderson

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.

Topics: Quality of Life, Living Successfully, Marfan Community, Marfan Conference

My Marfan Story: Kacey Lamphier

Feb 27, 2018 by Kacey Lamphier

The month of February is extra important to me as it marks the month of the heart. I have been living with Marfan syndrome for 30 years; however, I’ve only been diagnosed for 22 years. I try every day to share my story and knowledge about the condition. The more we speak up, the more people we can be helping. Here is my story.

Topics: Living Successfully, Marfan Awareness, Marfan Community