Blog Category: Community

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...

Community, Family Planning, Volunteer May 2, 2014February 25, 2021

Nicole Kramer – My Marfan Story

Twelve years ago I married my husband Mike. Up until I met him, I had never heard of Marfan...

Community, Diagnosis, Family Planning December 17, 2013February 25, 2021

What the Marfan Community Means to Us

When my younger daughter Cassie turned one almost six years ago, I thought we'd ended the craziest...

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and Fight for Victory

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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