Blog Category: Community

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,...

Community, Family Planning, Volunteer September 26, 2014February 25, 2021

Jennifer Lynch – My Marfan Story

My daughter, Emma, just started 6th grade - middle school in our district. Like a lot of parents...

Community, Conference August 14, 2014February 25, 2021

Julie Kurnitz’s Marfan Story Gives Hope to Others

Ten years ago, we lost a dear member of our community, Julie Kurnitz. Julie served on our Board of...

Community, Diagnosis August 5, 2014February 25, 2021

Victoria Falcone – My Marfan Story

“With pain comes strength.” This is a quote that I had found online three years ago and...

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...

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