The Marfan Blog

Quality of Life: The Three Big Questions

You see your doctors, take your medications, have your Marfan syndrome features monitored...

Quality of Life December 3, 2015February 24, 2021

Community, Volunteer November 20, 2015February 24, 2021

7 Simple Fundraising Tips You Can Use Today

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

Community, Family Planning, Volunteer November 20, 2015February 24, 2021

Carolyn Fisher – My Marfan Story

“You are so lazy! Why don’t you get a life!” These words I heard belching from my...

Quality of Life November 4, 2015February 24, 2021

Steve Henry – My Marfan Story

Many people with Marfan syndrome and related disorders find strength from their faith. It helps...

Community, Diagnosis, Volunteer September 22, 2015February 24, 2021

From the Journal of Owen Gray: 2015 Annual Family Conference

Owen Gray, 14, was diagnosed with Marfan syndrome in the summer of 2014. He was excited about...

Awareness, Community, Volunteer June 16, 2015February 24, 2021

Expressing Gratitude

On May 17, 2015, Alix McLean Jennings, of Madison, NJ, led Team Cassie in the Superhero...

Community, Conference May 28, 2015February 24, 2021

Krystal Camire – My Marfan Story

My journey with Marfan syndrome has been a long and complicated one. I was first tested when I was...

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Together, We Can Know the Signs and Fight for Victory

Know the signs. Fight for victory.

Together, We Can Know the Signs
and Fight for Victory