Connective Issues Spring/Summer 2026

YEARS OF IMPACT

The Marfan Foundation Journey Since Antoine Marfan first described the condition in 1896, understanding of Marfan syndrome has advanced dramatically. Over the past 45 years, the Marfan Foundation has led the charge in research, education, and support for those affected by Marfan and related conditions. With each breakthrough, we’re getting closer to what once seemed out of reach: a cure. And we’re just getting started. As we forge ahead, let’s celebrate the progress, the people, and the possibilities that have brought us this far.

1981

1984 5 The power of print: The first edition of our tri-annual magazine, Connective Issues , is published and sent to 1,500 people. Today, the award-winning magazine reaches 20,000 people in print and digitally. Marfan syndrome, and its life-threatening risks, steps into the national spotlight with the Newsweek cover story “ Gene Doctors ,” which highlights groundbreaking genetic research at Johns Hopkins. 6

1987 10 NMF headquarters opens in the Mertz Building in Port Washington, NY with two paid staffers and one phone line. The Foundation was able to purchase one computer from IBM with a $3,000 Mertz Grant.

Inspired by the success of community-driven

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movements among people living with dwarfism, Reed Pyeritz, MD , PhD, envisioned a network of support for those with Marfan syndrome. On May 10, 20 people gathered at the Baltimore home of his mentor, Victor McKusick, MD , for the first meeting of what would become the National Marfan Foundation (NMF).

1986

1991 11 A defining step in Marfan research: Foundation connected scientists, convened in Cold Spring Harbor, NY, by Priscilla Ciccariello, identify and describe the FBN1 gene . Mutations in the gene are shown to cause Marfan syndrome, solving a long-standing medical mystery. 12 The NMF launches its toll-free hotline to help

7 The Foundation awards its first research grant to Dr. Dianna Milewicz for her study: Abnormalities in Fibrillin Observed in Cells from People with Marfan Syndrome .

2 NMF grows from a small, volunteer-driven effort into a national organization, led by founding figures Dr. Pyeritz; Dr. McKusick, widely known as the father of modern genetics; and “Marfan Mom” Priscilla Ciccariello . Priscilla served informally as the volunteer director of the Foundation for years to follow. Our Professional Advisory Board (PAB) of healthcare providers and scientists is established; Dr. Pyeritz serves as the first chair. 1982 4 The first NMF Conference — attended by 50 community members—is held in Baltimore. 3

US Volleyball Olympic Team Captain Flo Hyman passes

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away during a game from an aortic dissection related to undiagnosed Marfan syndrome. Her tragic loss greatly increases interest in the National Marfan Foundation.

answer questions from both community members and medical providers.

9 The Foundation establishes a Scientific Advisory Board (SAB) with Dr. McKusick as the first chair. The purpose is to evaluate research proposals and their merit for funding.

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Marfan.org