Three Things I’ve Learned In 25 Years Since Diagnosis
I was diagnosed with Marfan syndrome at the age of ten during a visit to the Mayo Clinic on...
Blog Category: Quality of Life
Top 10 Benefits of Remote Jobs for those with a Chronic Condition
When I came to work for the Foundation in 2016, I was the first full-time employee with Marfan...
Pain and Perseverance
When you're living with a condition like Marfan syndrome, it's easy to fall into the thinking that...
#VictoryToday
On December 3, the entire world will be participating in Giving Tuesday. Many people with Marfan...
Awareness Feels Good
I’ve been reflecting recently. My son, Julian, just turned 8. That makes him the same age that I...
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)...
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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