The Marfan Blog

Victory Is… Twenty-Five Bonus Years

In 1989, I was beginning my sophomore year of college when I received a call from home. While he...

Community, Family Planning May 15, 2015February 24, 2021

Awareness, Community, Conference April 8, 2015June 9, 2022

Peter Donato – My Conference Story

The end of this year will mark 10 years since my world changed, 10 years since my parents scoured...

Research December 26, 2014February 25, 2021

Meet a Marfan Researcher – Silvia Smaldone, PhD

One of the most satisfying aspects of being part of this community is meeting the people who work...

Awareness, Community, Volunteer November 11, 2014February 25, 2021

Adopt-A-School Victory Challenge Mini iPad Winner

This fall, we held the Adopt-A-School Victory Challenge to encourage parents, guardians,...

Community, Family Planning, Volunteer September 26, 2014February 25, 2021

Jennifer Lynch – My Marfan Story

My daughter, Emma, just started 6th grade - middle school in our district. Like a lot of parents...

Community, Conference August 14, 2014February 25, 2021

Julie Kurnitz’s Marfan Story Gives Hope to Others

Ten years ago, we lost a dear member of our community, Julie Kurnitz. Julie served on our Board of...

Community, Diagnosis August 5, 2014February 25, 2021

Victoria Falcone – My Marfan Story

“With pain comes strength.” This is a quote that I had found online three years ago and...

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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