The Marfan Blog

Cindy Amdur – My Marfan Story

“I wouldn’t worry too much about the rapid heart beat, but you should look at this.” Those...

Community, Conference, Family Planning May 29, 2014July 14, 2021

Community, Family Planning May 28, 2014February 25, 2021

Suely Johns – My Marfan Story

When I shared that my victory over Marfan and related disorders was "Finding a MarFriend and a...

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...

Conference May 15, 2014February 25, 2021

WORK IT!

I first got involved with The Marfan Foundation the summer before my freshman year of high school....

Community, Family Planning, Volunteer May 2, 2014February 25, 2021

Nicole Kramer – My Marfan Story

Twelve years ago I married my husband Mike. Up until I met him, I had never heard of Marfan...

Quality of Life April 28, 2014February 25, 2021

Embracing A Road Not Chosen Through Painting

Embracing a road not chosen is a choice that is put in front of all of us when facing an illness...

Conference, Family Planning April 16, 2014February 25, 2021

Aortic Dissection, My Family, and the Annual Marfan Conference

I don’t have the greatest memory, so I am not sure when I attended my first conference. I do...

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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