Blog Category: Awareness

Awareness, Know the Signs, Mental Health, Surgery, Volunteer September 13, 2023September 14, 2023

Joaquin’s Story: Aortic Disease Awareness

"My whole world changed in an instant..." On July 31, 2020, my whole world changed in an...

Advocacy, Awareness, Community, Education, Mental Health June 1, 2023June 14, 2023

Connected and Not Alone

I was so excited to attend the Michigan Regional Symposium in early May! We moved to Michigan in...

Advocacy, Awareness, Community February 21, 2023February 17, 2023

Passion and Outreach Lead to Marfan Awareness

A Marfan Awareness Month Blog Photo: In January, Christopher was presented with a...

Awareness, Mental Health February 13, 2023February 13, 2023

Mental Health: Sharing Leads to Support and Hope

What are the mental health issues that people with Marfan syndrome and related connective tissue...

Awareness February 6, 2023February 2, 2023

Dr. Douglas Richter: Insights from a Medical Expert with Marfan Syndrome

A Marfan Awareness Month Blog Marfan Awareness Month is a time to raise awareness of Marfan...

Awareness January 31, 2023January 31, 2023

Pamela Cummings: Advocacy Though Online Action

A Marfan Awareness Month Blog Q&A There are many ways to spread Marfan awareness and...

Advocacy, Awareness, Community December 8, 2022December 8, 2022

An Ode to the Spoon Theory and Online Communities

Chronically ill and disabled individuals utilize the internet to find community and spread...

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