The Marfan Blog

A Legacy of Gratitude

Every August, Make-A-Will Month serves as an important reminder that creating an estate plan isn't...

Awareness, Community, Education, Healthcare Management August 20, 2026August 25, 2026

Awareness, Community August 20, 2026August 26, 2026

Essential Care: Mental Health and Life with VEDS

“The mental health burden of living with VEDS is profound,” says Karen MountainJohnson, a...

Awareness, Community, Volunteer August 20, 2026

Small Events—Big Impact

It was the little touches that made the June 20 Well Kirtland Golf Fundraiser for the VEDS...

Awareness, Community August 13, 2026August 13, 2026

Family Creates Tournament to Raise Awareness Following Loss of Husband and Son to Loeys-Dietz Syndrome

For father and son Greg and Trent Hall, cornhole was a family...

Community August 12, 2026August 12, 2026

Ciccariello Family Statement on the Passing of Dr. Reed Pyeritz

The late Priscilla Ciccariello was the original "Marfan Mom" and her mission to protect her family...

Community, Healthcare Management July 29, 2026August 20, 2026

From Lived Experience to Healthcare Professional

How community members are shaping the future of care. For many in the Marfan Foundation...

Community, Conference, Quality of Life July 15, 2026July 15, 2026

How a Marfan Foundation Conference Led to a Cross-Country Forever Friendship: Jennie & Danielle’s Story

Jennie Aucoin traveled to the Marfan Foundation Conference in Atlanta in July of...

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