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

In 2018, Resolve to Practice Self-Care

Jan 8, 2018 by Jan Lynch

When we wish others a healthy and happy new year, we do not say those words lightly. In many cases, we cherish well-being for ourselves and others because we know what it’s like when we don’t have our good health.

Topics: Quality of Life, Tips, self care

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

Tips To Help You Make the Most Out Of Your Doctor Visits

Dec 11, 2017 by Jan Lynch

Topics: Quality of Life, doctors, Tips