The Marfan Blog

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

Expressing Gratitude

Jun 16, 2015 by Alix McLean Jennings

On May 17, 2015, Alix McLean Jennings, of Madison, NJ, led Team Cassie in the Superhero Half-Marathon and Relay in Morristown, NJ, in honor of her daughter, Cassie, 8, who has Marfan syndrome. With her permission, we are sharing the letter of gratitude that she sent her many family members and friends who supported her in her effort to raise money for The Marfan Foundation.

Topics: Volunteer, Marfan Awareness, Marfan Community

Adopt-A-School Victory Challenge Mini iPad Winner

Nov 11, 2014 by The Marfan Foundation

This fall, we held the Adopt-A-School Victory Challenge to encourage parents, guardians, grandparents, and any adults to bring our teacher and school nurse resources to their local schools. We randomly selected one of the participants in the challenge as the winner of an iPad mini... and the winner was Eva Marie Seijo, of Virginia Beach, VA.

Topics: Volunteer, Marfan Awareness, Marfan Community