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.
“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.
“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?
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.
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.