Blog Category: Advocacy

Advocacy, Awareness, Community, Education June 1, 2023June 1, 2023

Connected and Not Alone

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

Advocacy, Conference, Diagnosis, Know the Signs April 6, 2023April 24, 2023

A Trip to Conference Leads to a Marfan Diagnosis for 30+ Family Members

Last year, Reginald “Reg” Bronson and his family gathered for the funeral of his brother who...

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...

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...

Advocacy, Education April 11, 2022April 11, 2022

Activating Your Activism

Emily Ladau, author and activist, is a part of the rare disease community. She lives with Larsen...

Advocacy, Awareness, Education, Know the Signs, Volunteer February 1, 2022January 31, 2022

Awareness is Never Losing Someone Unexpectedly to Marfan Syndrome

Helping Others Helps Me I share because I care. It sounds simple, but it is so true. There are...

Advocacy, Awareness, Community, Know the Signs December 3, 2021December 3, 2021

An Eagle Scout’s Generosity in Memory of a Friend

Jonathan Brink, an 18-year-old who attends Branham High School in California and is a Boy Scout in...

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Blog Category: Advocacy

Connected and Not Alone

A Trip to Conference Leads to a Marfan Diagnosis for 30+ Family Members

Passion and Outreach Lead to Marfan Awareness

An Ode to the Spoon Theory and Online Communities

Activating Your Activism

Awareness is Never Losing Someone Unexpectedly to Marfan Syndrome

An Eagle Scout’s Generosity in Memory of a Friend

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Together, We are Fighting for Victory

Know the signs. Fight for victory.

Together, We are Fighting for Victory

Join us in the fight for victory over genetic aortic and vascular conditions. Sign up to get the latest news and updates.

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Have a question? We can help.

Together, We are Fighting for Victory

Know the signs. Fight for victory.

Together, We are Fighting for Victory