Working with Your School Nurse
For parents of a child with a connective tissue condition, worrying is a daily habit. The...
The Marfan Blog
Invaluable Little Moments
At a time when technology infuses our lives in almost every way, it is hard to imagine that the...
Finding Commonality at the Marfan Annual Conference
The diagnosis of a potentially life-threatening genetic disorder like Marfan syndrome, Loeys...
Awareness Feels Good
I’ve been reflecting recently. My son, Julian, just turned 8. That makes him the same age that I...
Finding Marfan: A Breakthrough in Mental Health
This past year I turned the big 4-0. Forty years…my gosh, it goes by fast. But if you think...
Adolescent, Angry & Aware: Learning to make sense of ourselves and our bodies
Have you ever found yourself in a group of new friends and pushed yourself a little (or a lot)...
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...
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