Community Archives - Page 4 of 11

Nick’s Journey in Honor of Connor’s Big Heart

On the morning of December 3, 2020, Nick Metz, a 16-year-old in California, was schooling from...

Advocacy, Awareness, Community, Volunteer March 16, 2021January 31, 2024

Amy Kipnis, the volunteer leader of our Legislative Action Team, has been a long-time volunteer at...

The broad goal of Marfan awareness is about seeing the complete person behind the diagnosis. My...

When my daughter, Gabriella, was diagnosed with Marfan syndrome at the age of five our family was...

When I had my open-heart surgery to repair my aorta back in the summer of 2014, I did not have...

Awareness, Community April 23, 2020February 24, 2021

Have you seen this? Several leading Foundation volunteers recently launched a new social media...

Awareness, Community, Education April 6, 2020February 24, 2021

A few years ago, while writing stories for a healthcare company, I found myself in conversation...