The Marfan Blog

The Marfan Foundation

The Marfan Foundation works to extend the lives and improve the quality of life for everyone living with Marfan, Loeys-Dietz, VEDS, and other genetic aortic and vascular conditions.

Recent Posts

Beauty Enthusiast Overcomes Obstacles

Jun 30, 2021 by The Marfan Foundation

Creative, free-spirited, business owner, and recent college graduate, Adariel Lee, of the Bronx, NY,  was diagnosed with Marfan syndrome at the age of 4 when her mother noticed she was looking down at her hands a lot. At an eye doctor appointment, they learned that the connective tissue in her eye was loose, leading her to additional medical evaluations. As a result, the diagnosis of Marfan syndrome was confirmed. Adariel is the first in her family to have the condition. 

Topics: Marfan Awareness, Marfan Community, Diagnosis, Quality of Life, Medical Management, Surgery

Losing My Sight Saved My Life

May 3, 2021 by The Marfan Foundation

Jasmine’s family (l-r) Mom Joanne Duffey, dad Alvin Duffey, Jasmine, sister Jawanda Duffey, and brother Jarvis Williams.

At 6’7” tall, Jasmine Duffey was one of the nation’s top basketball prospects in high school. She headed to Middle Tennessee State to pursue her dreams of college basketball, with hopes of going even further in the sport she loved. It was not to be.

Topics: Marfan Awareness, Diagnosis, Living Successfully, Quality of Life, wellness

Volunteer Drives Successful First-Year Proclamation Project

Mar 16, 2021 by The Marfan Foundation

Amy Kipnis with her family at Hill Day in 2019.

Topics: Volunteer, Marfan Awareness, Hill Day, Education

How It's Going

Feb 12, 2021 by The Marfan Foundation

Trendsetting Volunteers Encourage Others to #DanceForVictory

Apr 23, 2020 by The Marfan Foundation

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