Blog Category: Community

Community, Diagnosis, Know the Signs, Quality of Life September 8, 2016February 24, 2021

Sinclaire’s Story from the Heart

Most people affected by Marfan syndrome experience a life-changing moment when they or a loved one...

Community, Know the Signs, Quality of Life July 20, 2016February 24, 2021

Linh Ngo: My Marfan Story

Part 1 of Linh Ngo’s Marfan story is reprinted here with permission from the author. You can...

Community, Quality of Life May 13, 2016February 24, 2021

When People Don’t Get It

As an individual with Marfan syndrome, you've most likely had that awkward encounter with a...

Community, Quality of Life March 10, 2016February 24, 2021

College with Loeys-Dietz syndrome

College can be one of the most fun periods in a person’s life, yet it can also be one of the...

Awareness, Community, Family Planning February 8, 2016February 24, 2021

Jamie Efurd – My Marfan Story

“Make it through the door, Jamie. Make it through the door.” Those were my first thoughts as...

Community, Volunteer November 20, 2015February 24, 2021

7 Simple Fundraising Tips You Can Use Today

“Where there is unity there is always victory.” –Publilius Syrus Our nationwide Walk...

Community, Family Planning, Volunteer November 20, 2015February 24, 2021

Carolyn Fisher – My Marfan Story

“You are so lazy! Why don’t you get a life!” These words I heard belching from my...

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