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 Marfan Blog
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...
Peace Through Connection
Connection is at the core of the Snyder family’s resilience. Through a combination of close...
Lifesaving Education
There are few things stronger than a mother’s intuition. The strength of this “knowing” is...
We Found Our Family
For most people, family is the first group of people we know and trust. Newborn babies know their...
Globetrotting When It’s Hard to Trot
I’ve always dreamed about exploring new places, but in my fantasy explorations, my body is...
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