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

The Marfan Foundation and Backpack Health: Frequently Asked Questions

May 17, 2018 by The Marfan Foundation

The Marfan Foundation announced that, starting today, it is making a new app available for free to people with Marfan and related disorders – and their families – to securely manage their medical records.

Topics: Living Successfully, Quality of Life, Healthcare Management, Medical Management

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: Marfan Awareness, Marfan Community, Living Successfully

My Marfan Story: Home for Christmas

Dec 20, 2017 by Auburn Ponder Anderson

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

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

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: Marfan Community, Living Successfully, Quality of Life