The Marfan Blog

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

Marfan Diagnosis: A Game Changer

Feb 20, 2018 by Rita McCrerey

A Marfan or related disorder diagnosis can be elusive for an athlete, particularly an athlete who does not display the typical cluster of characteristics.

Topics: Marfan Awareness, Physical Activity, Marfan Community

My Marfan Story: Home for Christmas

Dec 20, 2017 by Auburn Ponder Anderson

Auburn's late husband, Ted, with their son, Kelly.

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

Newly Diagnosed? Veterans in the Marfan Community Offer Advice

Oct 31, 2017 by The Marfan Foundation

When you or a loved one receives a diagnosis of Marfan syndrome or a related disorder, you enter a whole new world. Everyone deals with the diagnosis differently.

Topics: Living Successfully, Quality of Life, Marfan Community