Marfan Awareness: Paula’s Story
In early January 1985, Dr. Reed Pyeritz, of Johns Hopkins Hospital in Baltimore confirmed, through...
Blog Category: Awareness
Jamie Efurd – My Marfan Story
“Make it through the door, Jamie. Make it through the door.” Those were my first thoughts as...
Expressing Gratitude
On May 17, 2015, Alix McLean Jennings, of Madison, NJ, led Team Cassie in the Superhero...
Peter Donato – My Conference Story
The end of this year will mark 10 years since my world changed, 10 years since my parents scoured...
Adopt-A-School Victory Challenge Mini iPad Winner
This fall, we held the Adopt-A-School Victory Challenge to encourage parents, guardians,...
Ben Carpenter – My Marfan Story
Before I share my story, I want to clarify that the title of my book, “The Bigs,” has nothing...
5 Things You Can Do for Marfan Awareness Month
Do you still get blank stares from people when you say that you have Marfan syndrome? How many...
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