Blog Category: Awareness

Awareness, Community February 20, 2018February 24, 2021

Marfan Diagnosis: A Game Changer

A Marfan or related disorder diagnosis can be elusive for an athlete, particularly an athlete who...

Awareness January 31, 2018February 24, 2021

Marfan Awareness: Paula’s Story

In early January 1985, Dr. Reed Pyeritz, of Johns Hopkins Hospital in Baltimore confirmed, through...

Awareness, Community, Family Planning February 8, 2016February 24, 2021

Jamie Efurd – My Marfan Story

“Make it through the door, Jamie. Make it through the door.” Those were my first thoughts as...

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...

Awareness, Community, Conference April 8, 2015June 9, 2022

Peter Donato – My Conference Story

The end of this year will mark 10 years since my world changed, 10 years since my parents scoured...

Awareness, Community, Volunteer November 11, 2014February 25, 2021

Adopt-A-School Victory Challenge Mini iPad Winner

This fall, we held the Adopt-A-School Victory Challenge to encourage parents, guardians,...

Advocacy, Awareness, Know the Signs May 22, 2014February 25, 2021

Ben Carpenter – My Marfan Story

Before I share my story, I want to clarify that the title of my book, “The Bigs,” has nothing...

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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