Author: Susan Benvenuti

Susan Benvenuti is the VP, Integrated Marketing & Communications for The Marfan Foundation. She enjoys getting to know community members and sharing their unique stories. If you would like to share yours, we’d love to hear from you - get started by emailing sbenvenuti@marfan.org.

Stickler Syndrome: A New Chapter of Connection, Support, and Resources

Before Lissa Elkins and her husband welcomed twins in 2019, their life was busy but...

Awareness November 28, 2025November 28, 2025

Awareness, Education, Events News, News November 13, 2025November 13, 2025

Cincinnati Regional Symposium Brings Experts and Families Together

On October 25, the Marfan Foundation and Cincinnati Children’s Hospital Medical...

November 7, 2025November 25, 2025

COVID-19 Vaccine Statements

COVID-19 Vaccine Statements The Foundation's Professional Advisory Board has issued an...

Announcements October 24, 2025October 24, 2025

“I felt at peace once it was done.” FreeWill estate-planning tool offered

How One Family Found Security Through a Free Foundation Resource ADVISORY: Please...

Awareness, Community, Conference March 11, 2025March 11, 2025

Teen Voices: Overcoming Challenges

Being a teen isn’t always easy, and teens with genetic aortic and vascular conditions like...

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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