The Marfan Blog

Community, Conference March 11, 2019February 24, 2021

Finding Commonality at the Marfan Annual Conference

The diagnosis of a potentially life-threatening genetic disorder like Marfan syndrome, Loeys...

Awareness, Diagnosis, Quality of Life February 20, 2019February 24, 2021

Awareness Feels Good

I’ve been reflecting recently. My son, Julian, just turned 8. That makes him the same age that I...

Awareness, Diagnosis, Know the Signs February 15, 2019February 24, 2021

Finding Marfan: A Breakthrough in Mental Health

This past year I turned the big 4-0. Forty years…my gosh, it goes by fast. But if you think...

Awareness, Quality of Life, Research February 11, 2019February 24, 2021

Adolescent, Angry & Aware: Learning to make sense of ourselves and our bodies

Have you ever found yourself in a group of new friends and pushed yourself a little (or a lot)...

Advocacy, Education, Healthcare Management January 11, 2019January 31, 2024

Advocacy in Action: My Experience Lobbying for The Marfan Foundation on Capitol Hill

In June 2017, a midterm election had just occurred with the issue of pre-existing conditions and...

Healthcare Management January 8, 2019February 24, 2021

The Easiest Resolution: Taking Control of Your Health Journey in 2019

The ball has dropped, and we rang in the New Year. Ready or not, 2019 is here. As we slide back...

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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