“This is your story. You are your own unique person.” Living with Marfan syndrome as a member of the LGBTQ+ community
As we commemorate Pride Month, Grace shares her personal perspective as an individual living with...
The Marfan Blog
First Person: Why We Walk – Greater Boston’s Damaa Family
I'm Becky. I am an ICU nurse, avid crocheter, and a wife to my incredibly amazing husband,...
“A Better Perspective and Stronger Determination”: Justice Adrienne W. Albrecht’s Life with a “Marfan Body”
Adrienne W. Albrecht says she learned to read with her nose “practically touching the...
Call Her Wonder Woman: Percussionist Bella Sera Rocks On!
When Bella Sera was growing up in Houston, Texas, she was tired of other kids calling her...
Leaving home for the first time and living with Marfan: “I have truly discovered the power and strength that lives within me.”
Guest blogger Coley Jackson, 21, of Raleigh, NC is a current student at James Madison University....
Jewelry Designer Living with Marfan Creates Necklace to Commemorate Awareness Month
A Los-Angeles-based jewelry designer and member of the Marfan community has created a specially...
Knowledge of Marfan Syndrome Fosters Longevity, Drives Purpose
I was diagnosed with Marfan Syndrome at birth. My father had a spontaneous mutation, and he passed...
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