The Marfan Blog

Let’s Just Get Checked Out

I'd actually heard about Marfan Syndrome before my dissection. It was mentioned on a TV program...

Awareness, Community, Know the Signs November 28, 2023

Community, Volunteer October 26, 2023October 26, 2023

Running with Purpose: Jenny Braverman

Running this marathon on behalf of my family and others affected by Marfan Syndrome and related...

October 23, 2023March 7, 2024

“After a Lifetime, I Get to Be Proactive”

A Marfan journey from aortic dissection to empowerment Stephanie Mahnken of Dillonvale, OH...

Community October 13, 2023October 13, 2023

In Memory of Chris Heaney

This week, we sadly bid farewell to a true pillar of our Marfan community, Christopher Heaney. In...

Awareness, Know the Signs, Mental Health, Surgery, Volunteer September 13, 2023September 14, 2023

Joaquin’s Story: Aortic Disease Awareness

"My whole world changed in an instant..." On July 31, 2020, my whole world changed in an...

Advocacy, Awareness, Community, Education, Mental Health June 1, 2023June 14, 2023

Connected and Not Alone

I was so excited to attend the Michigan Regional Symposium in early May! We moved to Michigan in...

Community, Conference, Quality of Life May 3, 2023May 4, 2023

A Teen’s Perspective: Finding a Community at Conference

As a teen with a connective tissue condition, building relationships with others who “get” you...

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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