The Marfan Blog

Adopt-A-School Victory Challenge Mini iPad Winner

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

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

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...

Community, Family Planning May 28, 2014February 25, 2021

Suely Johns – My Marfan Story

When I shared that my victory over Marfan and related disorders was "Finding a MarFriend and a...

Advocacy, Awareness, Know the Signs May 22, 2014February 25, 2021

Ben Carpenter – My Marfan Story

Before I share my story, I want to clarify that the title of my book, “The Bigs,” has nothing...

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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