First Person: Aida’s experiences as a mom with Marfan syndrome
My name is Aida, I'm from Mexico. In 2003 I came to United States to live. One of my sons,...
The Marfan Blog
Aortic Dissection Survivor David Noe’s Experience Leads to Family Members’ Marfan Diagnoses and Preventative Surgeries
“All of a sudden, I just had a crushing chest pain.” David Noe, who had spent large...
Finding Purpose After Loss: Parents’ Mission to Save Others
Kaitlyn was a vibrant, seemingly healthy 14-year-old girl who enjoyed musical theater and...
“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...
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...
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