Know the Signs, Fight for Victory

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Blog Category: Community

Advocacy, Awareness, Community, Diagnosis, Surgery November 16, 2021

Three Keys to a Positive Outcome

Looking back on her life growing up with Marfan syndrome, Taylor Storm can identify three keys...

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Awareness, Community, Quality of Life September 8, 2021September 8, 2021

Power Couple Surges Through Connective Tissue Condition to Help Others

On a crisp day in 2010, Pam Moultrup entered the hospital. She checked in at the reception desk...

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Awareness, Community, Diagnosis, Quality of Life, Surgery June 30, 2021July 27, 2021

Beauty Enthusiast Overcomes Obstacles

Creative, free-spirited, business owner, and recent college graduate, Adariel Lee, of the Bronx,...

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Advocacy, Awareness, Community, Volunteer March 16, 2021March 23, 2021

Volunteer Drives Successful First-Year Proclamation Project

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

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Advocacy, Awareness, Community, Healthcare Management, Quality of Life February 26, 2021July 29, 2021

A Journey of Acceptance

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

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Awareness, Community, Family Planning, Quality of Life February 23, 2021February 24, 2021

Marfan Moms: The Ultimate Support Group

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

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Together, We are Fighting for Victory

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Know the signs. Fight for victory.

Join us in the fight for victory over Marfan syndrome, Loeys-Dietz, VEDS, and other genetic aortic and vascular conditions. Help us create a world in which everyone with these conditions can live their best life.