The Marfan Blog

Sydney Lerman Pediatric Hospitality Program: Join Sydney and Carly in Giving Back

Sep 12, 2017 by The Marfan Foundation

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

My Marfan Story: Keith Avitabile

Aug 14, 2017 by Keith Avitabile

Topics: Living Successfully, Quality of Life

Beautiful Gift

Jul 26, 2017 by Alison DenBoer

Hi my name is Allison. I was diagnosed with Marfan syndrome when I was 15 years old after my older brother had open heart surgery for an aortic root repair. Out of five siblings, four of us have Marfan syndrome.

Topics: Family Planning, Marfan Community, Living Successfully

Why I'm Grateful for Marfan Syndrome

Jun 2, 2017 by Latasha Doyle

I was recently reading a book called How to Live a Good Life by Jonathan Fields (which I highly recommend). In one of the chapters, he asks the question:

Topics: Marfan Community, Living Successfully, Quality of Life

“If This is the Future of the Foundation, Then Victory is Around the Corner!” Teen Council members are leaders and role models

May 15, 2017 by Diane McKenzie

The Marfan Foundation’s Teen Council is a force to be reckoned with now. And they are clearly our future movers and shakers. This group of teens – who either have Marfan or a related disorder or have a sibling who is affected – is the voice of our adolescent community. Their primary focus is planning for the annual conference each summer; however, plans are underway for even greater involvement throughout the year.

Topics: Marfan Conference