Blog Category: Community

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

Cindy Amdur – My Marfan Story

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

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...

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...

Community, Diagnosis, Family Planning December 17, 2013February 25, 2021

What the Marfan Community Means to Us

When my younger daughter Cassie turned one almost six years ago, I thought we'd ended the craziest...

Community, Research November 22, 2013February 25, 2021

At This Moment of Opportunity, I’m Thankful for You.

When I started my journey with The Marfan Foundation 19 years ago, we were up against so...

Community, Conference September 16, 2013January 31, 2024

vic • to • ry

[vik-tuh-ree, vik-tree] A success or superior position achieved against any opponent,...

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

View all Divisions

View Our science and treatment arm

Know the signs. Fight for victory.

Join us in the fight for victory over Marfan syndrome, Loeys-Dietz, VEDS, and other genetic aortic and vascular conditions. Help us create a world in which everyone with these conditions can live their best life.

Donate Now

Stay Connected on Social Media

Have a question? We can help.

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