Finding Commonality at the Marfan Annual Conference
The diagnosis of a potentially life-threatening genetic disorder like Marfan syndrome, Loeys...
The Marfan Blog
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...
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...
Empowerment Means Saying Goodbye to the Sidelines
Keith has never been terribly outgoing. He’s taller than other kids and wears thick glasses. He...
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