The Marfan Blog

We Found Our Family

For most people, family is the first group of people we know and trust. Newborn babies know their...

Awareness, Community, Quality of Life November 9, 2018February 24, 2021

Quality of Life October 22, 2018February 24, 2021

Globetrotting When It’s Hard to Trot

I’ve always dreamed about exploring new places, but in my fantasy explorations, my body is...

Community, Healthcare Management, Research September 24, 2018February 24, 2021

Jim Cavan: The Journey to Backpack Health

Maggie, with her mom, Jennifer, at the Foundation's Boston Walk for Victory in June. As...

Education, Know the Signs August 9, 2018February 24, 2021

A Workplace Issue You Probably Didn’t Anticipate

It never gets easier. Each time I have to tell someone new about my husband's condition, it seems...

Healthcare Management, Quality of Life July 26, 2018February 24, 2021

Living with the Typical Marfan Body Type

“Oh, my goodness, how skinny you are.” “It takes a big man to love a skinny...

Community, Conference, Quality of Life May 26, 2018February 24, 2021

A Make-Over Because of the Marfan Annual Conference

Ashley Burks was 23 when her life changed. That year, 2005, she excitedly attended the Marfan...

Healthcare Management, Quality of Life May 17, 2018February 24, 2021

The Marfan Foundation and Backpack Health: Frequently Asked Questions

The Marfan Foundation announced that, starting today, it is making a new app available for free to...

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