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,...
The Marfan Blog
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...
5 Things You Can Do for Marfan Awareness Month
Do you still get blank stares from people when you say that you have Marfan syndrome? How many...
The First 6 Things You Should Do When Diagnosed with Marfan Syndrome
It’s the beginning of the new year. Is it the beginning of your Marfan journey? If you just...
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...
At This Moment of Opportunity, I’m Thankful for You.
When I started my journey with The Marfan Foundation 19 years ago, we were up against so...
Four Questions to Ask Your Family Over the Holidays
When is the most common time of the year for families to get together under one roof? That's...
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