Blog Category: Community

Awareness, Community, Know the Signs November 28, 2023November 28, 2023

The Cruz Family

Now that I see things more clearly about my son’s condition, I can tell you our story. My...

Awareness, Community November 28, 2023

Miracles Run In My Family

My father, my brother, and I each had aortic root and valve replacements at 26 years old. Anyone...

Awareness, Community, Know the Signs November 28, 2023

Let’s Just Get Checked Out

I'd actually heard about Marfan Syndrome before my dissection. It was mentioned on a TV program...

Community, Volunteer October 26, 2023October 26, 2023

Running with Purpose: Jenny Braverman

Running this marathon on behalf of my family and others affected by Marfan Syndrome and related...

Community October 13, 2023October 13, 2023

In Memory of Chris Heaney

This week, we sadly bid farewell to a true pillar of our Marfan community, Christopher Heaney. In...

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...

Community, Conference, Quality of Life May 3, 2023May 4, 2023

A Teen’s Perspective: Finding a Community at Conference

As a teen with a connective tissue condition, building relationships with others who “get” you...

Together, We Can Know the Signs
and Fight for Victory

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Together, We Can Know the Signs and Fight for Victory

Know the signs. Fight for victory.

Together, We Can Know the Signs
and Fight for Victory