Blog Category: Awareness

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...

Awareness, Volunteer January 8, 2014February 25, 2021

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...

Awareness, Volunteer September 27, 2013February 25, 2021

School’s in Session: What Better Time to Adopt a School!

If you have school-aged children with Marfan syndrome or a related disorder, you know how...

Awareness, Community, Volunteer September 3, 2013February 25, 2021

Running for Those Who Can’t

Why did I subject myself to the torment of a half marathon along the unforgiving pavement of Lake...

Together, We Can Know the Signs
and Fight for Victory

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Know the signs. Fight for victory.

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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