Blog Category: Conference

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, 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...

Conference May 15, 2014February 25, 2021

WORK IT!

I first got involved with The Marfan Foundation the summer before my freshman year of high school....

Conference, Family Planning April 16, 2014February 25, 2021

Aortic Dissection, My Family, and the Annual Marfan Conference

I don’t have the greatest memory, so I am not sure when I attended my first conference. I do...

Conference, Family Planning March 11, 2014February 25, 2021

My Daughter’s First Marfan Conference – A Decade After Diagnosis

There we were, at The Marfan Foundation’s 2013 Annual Family Conference in Beverly Hills,...

Conference, Know the Signs February 6, 2014February 25, 2021

Flaunting Every Single Bit of My DNA – Living with Marfan Syndrome

Though I stand at a measly 5'8 for a “Marf,” as a freshman in high school, I towered over my...

Community, Conference September 16, 2013February 25, 2021

vic • to • ry

[vik-tuh-ree, vik-tree] A success or superior position achieved against any opponent,...

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