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: Selma Kerzman

Oct 13, 2016 by Selma Kerzman

Blake and I met in high school. When I went to his high school graduation, I met his mom and dad. I made a comment about how tall he was while his parents were so short. That’s when I learned that his dad was there with his step-mom; Blake’s own mother died when he was eight years old from complications of Marfan syndrome.

Topics: Volunteer, Living Successfully, Quality of Life

7 Simple Fundraising Tips You Can Use Today

Nov 20, 2015 by The Marfan Foundation

“Where there is unity there is always victory.” –Publilius Syrus

Our nationwide Walk for Victory program is achieving just that…victory.

Roughly 200,000 people in the United States are living with Marfan syndrome or a related connective tissue disorder.  Since 1981, The Marfan Foundation has observed, and been a part of countless victories in the Marfan syndrome and related disorders community.

Topics: Volunteer, Marfan Community, Team Victory

Carolyn Fisher - My Marfan Story

Nov 20, 2015 by Carolyn Fisher

“You are so lazy! Why don’t you get a life!”  These words I heard belching from my mouth at my son. Ignorance can call you to say things you might regret.

I’ve spent 3 decades in sports - over 80,000 hours of gymnastics, 7 world titles in Arm Wrestling, and coached everything from our kid’s soccer games to recreational gymnastics to 8 years as a PE coach in a private school. How could it be that my son, Austin, would - instead of kicking a perfectly passed soccer ball to make a goal – raise a pointer finger at the soccer ball, and pretend he was shooting at it? How could it be that my son would opt for “wheelies” long after they were a fad?

Topics: Family Planning, Volunteer, Marfan Community, Team Victory

From the Journal of Owen Gray: 2015 Annual Family Conference

Sep 22, 2015 by Owen Gray

Owen Gray, 14, was diagnosed with Marfan syndrome in the summer of 2014. He was excited about attending his first annual family conference and journaled his thoughts in the days leading up the conference and during it.

Topics: Volunteer, Marfan Community, Diagnosis