The Marfan Blog

The Marfan Foundation

The Marfan Foundation creates a brighter future for everyone living with Marfan syndrome and related disorders.

Recent Posts

Trendsetting Volunteers Encourage Others to #DanceForVictory

Apr 23, 2020 by The Marfan Foundation

Have you seen this?

#VictoryToday

Dec 2, 2019 by The Marfan Foundation

On December 3, the entire world will be participating in Giving Tuesday. Many people with Marfan and related conditions are supporting The Marfan Foundation because of our impact on their lives. Liam, Peter, and Katie share how the Foundation is helping them achieve #VictoryToday.

Topics: Marfan Awareness, Marfan Community, Living Successfully, Education, giving tuesday

Working with Your School Nurse

Aug 24, 2019 by The Marfan Foundation

newsschoolyear

For parents of a child with a connective tissue condition, worrying is a daily habit. The beginning of a new school year is especially stressful. Not only do you and your family have to get back into the routine, but you and your child have to “break in” a new teacher and sometimes a new school and a new school nurse. You want to ensure that your child will be safe at school and empowered to achieve academically – and that the school can handle any potential emergency medical situation.

Topics: Medical Management, Education, school

The Easiest Resolution: Taking Control of Your Health Journey in 2019

Jan 8, 2019 by The Marfan Foundation

The ball has dropped, and we rang in the New Year. Ready or not, 2019 is here.

Topics: Healthcare Management, Medical Management, Backpack Health

Empowerment Means Saying Goodbye to the Sidelines

Nov 27, 2018 by The Marfan Foundation

Keith has never been terribly outgoing. He’s taller than other kids and wears thick glasses. He does not like the glasses. They’ve always bothered him, but now, as he gets a little older and he gets more questions about them from kids his age, he really wishes he could just wear contacts.

Topics: Marfan Awareness, Marfan Community, Quality of Life