The Marfan Blog

Running with Purpose: Jenny Braverman

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

Community, Volunteer October 26, 2023October 26, 2023

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...

Advocacy, Conference, Diagnosis, Know the Signs April 6, 2023April 24, 2023

A Trip to Conference Leads to a Marfan Diagnosis for 30+ Family Members

Last year, Reginald “Reg” Bronson and his family gathered for the funeral of his brother who...

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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