The Marfan Blog

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

Jennifer Lynch - My Marfan Story

Sep 26, 2014 by Jennifer Lynch

My daughter, Emma, just started 6th grade - middle school in our district. Like a lot of parents in my town, I watched her get on the bus, looking more grown up than ever, and then stood there for a moment, wondering, “How did THAT happen? Didn’t I just get her to give up her pacifier?”

Topics: Family Planning, Volunteer, Marfan Community

Nicole Kramer - My Marfan Story

May 2, 2014 by Nicole Kramer

Twelve years ago I married my husband Mike. Up until I met him, I had never heard of Marfan syndrome. My husband was diagnosed with Marfan syndrome at the age of 9. I came to understand that he had an issue with his heart that he took medication daily for and had echocardiograms to monitor his condition every six months. He was very tall and he had a pectus deformity which had been operated on when he was a child. Being a private person, I quietly read about the disorder and filed it away in the back of my mind, not wanting to talk about it or face the reality of this condition. Within a year of meeting Mike, he had two pectus surgeries. These were very painful but he fought hard and made a full recovery.

Topics: Family Planning, Volunteer, Marfan Community, Living Successfully