Community Archives - Page 5 of 11

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

Pain and Perseverance

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

Awareness, Community, Related Conditions February 6, 2020February 24, 2021

Cynthia De Boer’s nephew, Jimmy, was born with a very severe form of Marfan syndrome (known as...

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

At a time when technology infuses our lives in almost every way, it is hard to imagine that the...

Community, Conference March 11, 2019February 24, 2021

The diagnosis of a potentially life-threatening genetic disorder like Marfan syndrome, Loeys...

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...