Quality of Life Archives - Page 4 of 9

Quality of Life June 2, 2020February 24, 2021

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...

Awareness, Community, Quality of Life March 4, 2020February 24, 2021

When you're living with a condition like Marfan syndrome, it's easy to fall into the thinking that...

On December 3, the entire world will be participating in Giving Tuesday. Many people with Marfan...

Awareness, Diagnosis, Quality of Life February 20, 2019February 24, 2021

I’ve been reflecting recently. My son, Julian, just turned 8. That makes him the same age that I...

Awareness, Quality of Life, Research February 11, 2019February 24, 2021

Have you ever found yourself in a group of new friends and pushed yourself a little (or a lot)...

Awareness, Community, Quality of Life November 27, 2018February 24, 2021

Keith has never been terribly outgoing. He’s taller than other kids and wears thick glasses. He...

Connection is at the core of the Snyder family’s resilience. Through a combination of close...