Know the Signs, Fight for Victory

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...

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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...

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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...

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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...

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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...

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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...

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Together, We Can Know the Signs
and Fight for Victory

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Know the signs. Fight for victory.

Join us in the fight for victory over Marfan syndrome, Loeys-Dietz, VEDS, and other genetic aortic and vascular conditions. Help us create a world in which everyone with these conditions can live their best life.