The Marfan Blog

The Marfan Foundation

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

Recent Posts

Volunteer Drives Successful First-Year Proclamation Project

Mar 16, 2021 by The Marfan Foundation

Amy Kipnis with her family at Hill Day in 2019.

Topics: Volunteer, Marfan Awareness, Hill Day, Education

How It's Going

Feb 12, 2021 by The Marfan Foundation

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