Connective Issues Spring/Summer 2026

1994 13 Carolyn Levering is appointed as the NMF’s first paid executive director. She later becomes the first president & CEO. Under

1998 19 The Marfan Artists Project in New York City, hosted by Liz Claiborne executive Karen Murray, raises $65,000—launching what later becomes the annual Heartworks Gala. A “Marfan Mom,” Murray continues her decades- long support of the Foundation. 1999 20 The NMF Conference offers structured children’s and teen programs for the first time. 21 The annual Heartworks Gala, held at the Liz Claiborne venue in New York City, raises nearly $200,000; the first Hero with a Heart Award is presented. 2000 22 The Research Millennium Initiative begins, enabling the Foundation to award $100,000 in research grants for the first time. 23 A wave of national media coverage spotlights Marfan syndrome: Dr. Hal Dietz & Karen Murray appear on The Today Show . The following year, ER features the condition, and major outlets like

her leadership, the Foundation vastly increased research grant funding, educational programs, media coverage, patient support, and fundraising. In its first testimony before the House Appropriations Committee, the NMF—alongside the Coalition for Heritable Disorders of Connective Tissue— urges increased federal funding for connective tissue research. Delivered by member Scott Kiefer, the testimony helped secure a congressional directive to fund research. 15 The Foundation’s mission expands to include related connective tissue conditions. 14 1995 16 A landmark study in The American Journal of Cardiology shows life expectancy for people with Marfan syndrome increased from 48 in 1972 to about 72 by 1993, thanks to improvements in diagnosis and treatment. 1996 17 The NMF launches its first website to increase public awareness and provide information about its programs. 18 Jonathan Larson , creator of the blockbuster Broadway musical Rent , dies from an aortic dissection related to undiagnosed Marfan syndrome the night before the show’s premiere. In an investigation, the New York State Department of Health cited the NMF as the “lead advocate for people with aortic disease.” Larson’s legacy endures, raising widespread awareness of the condition.

2005 25 At Johns Hopkins, Loeys– Dietz syndrome (LDS) is discovered and named as a distinct connective tissue condition, expanding recognition of related genetic aortic conditions. 2006 26 With funding from the Foundation, researchers at Johns Hopkins publish a study showing Losartan prevented aortic aneurysm development in mice. 27 The National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Cardiovascular Conditions (GenTAC) is launched with advocacy from the Marfan Foundation, becoming a vital research resource for Marfan syndrome and related aortic conditions. 2007 28 The NMF provides patient support, promotes enrollment, and arranges publicity and funding for a major clinical trial on the drug Losartan . In 2014 the trial’s results indicate that Losartan is another medication option for Marfan syndrome, in addition to Atenolol, as it also slows the rate of aortic enlargement.

The New York Times follow, dramatically raising public awareness.

2003 24 The Foundation collaborates with The Wall Street Journal on a yearlong series about aortic aneurysms and dissection. The author nabs a Pulitzer Prize for his reporting on this critical, often underrecognized, medical issue.

Spring/Summer 2026 9