Blog Category: Community

Community, Diagnosis, Volunteer September 22, 2015February 24, 2021

From the Journal of Owen Gray: 2015 Annual Family Conference

Owen Gray, 14, was diagnosed with Marfan syndrome in the summer of 2014. He was excited about...

Awareness, Community, Volunteer June 16, 2015February 24, 2021

Expressing Gratitude

On May 17, 2015, Alix McLean Jennings, of Madison, NJ, led Team Cassie in the Superhero...

Community, Conference May 28, 2015February 24, 2021

Krystal Camire – My Marfan Story

My journey with Marfan syndrome has been a long and complicated one. I was first tested when I was...

Community, Family Planning May 15, 2015February 24, 2021

Victory Is… Twenty-Five Bonus Years

In 1989, I was beginning my sophomore year of college when I received a call from home. While he...

Awareness, Community, Conference April 8, 2015June 9, 2022

Peter Donato – My Conference Story

The end of this year will mark 10 years since my world changed, 10 years since my parents scoured...

Awareness, Community, Volunteer November 11, 2014February 25, 2021

Adopt-A-School Victory Challenge Mini iPad Winner

This fall, we held the Adopt-A-School Victory Challenge to encourage parents, guardians,...

Community, Family Planning, Volunteer September 26, 2014February 25, 2021

Jennifer Lynch – My Marfan Story

My daughter, Emma, just started 6th grade - middle school in our district. Like a lot of parents...

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