A Journey of Acceptance
The broad goal of Marfan awareness is about seeing the complete person behind the diagnosis. My...
Blog Category: Healthcare Management
Top Five Things I Wish I Knew Before My Aortic Surgery
When I had my open-heart surgery to repair my aorta back in the summer of 2014, I did not have...
Your Questions Answered: Medical Geneticist and Genetic Testing
If you have a connective tissue condition or are seeking an evaluation for one, you know that you...
A Look Back: How Far We’ve Come in Aortic Surgery for Marfan Syndrome
My interest in Marfan syndrome started many years ago when I was in high school in South Africa....
Working with Your School Nurse
For parents of a child with a connective tissue condition, worrying is a daily habit. The...
Advocacy in Action: My Experience Lobbying for The Marfan Foundation on Capitol Hill
In June 2017, a midterm election had just occurred with the issue of pre-existing conditions and...
The Easiest Resolution: Taking Control of Your Health Journey in 2019
The ball has dropped, and we rang in the New Year. Ready or not, 2019 is here. As we slide back...
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