Blog Category: Community

Advocacy, Awareness, Community June 26, 2024July 31, 2024

Finding Purpose After Loss: Parents’ Mission to Save Others

Kaitlyn was a vibrant, seemingly healthy 14-year-old girl who enjoyed musical theater and...

Awareness, Community, Quality of Life, Surgery December 19, 2023December 20, 2023

Sweet Relief

Guest writer Mazzy Sass is a junior at Schreiber High School in Port Washington, NY (also the...

Community, Healthcare Management, Quality of Life December 12, 2023December 12, 2023

Generational Care Provides Continuity

Debra Theine has experienced Marfan syndrome’s impact as a daughter, patient, mother, and...

Awareness, Community, Know the Signs November 28, 2023November 28, 2023

The Cruz Family

Now that I see things more clearly about my son’s condition, I can tell you our story. My...

Awareness, Community November 28, 2023

Miracles Run In My Family

My father, my brother, and I each had aortic root and valve replacements at 26 years old. Anyone...

Awareness, Community, Know the Signs November 28, 2023

Let’s Just Get Checked Out

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

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...

Together, We Can Know the Signs
and Fight for Victory

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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