The Marfan Blog

Peter Donato – My Conference Story

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

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

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...

Community, Conference, Family Planning May 29, 2014July 14, 2021

Cindy Amdur – My Marfan Story

“I wouldn’t worry too much about the rapid heart beat, but you should look at this.” Those...

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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