Connective Issues Spring/Summer 2026

2008 29 The NMF champions the Genetic Information Nondiscrimination Act (GINA) , which passes with near-unanimous support in Congress, protecting individuals from discrimination based on their genetic information. 2009 30 NMF moves into the world of social media by establishing a Facebook account .

2021 40 The first virtual conference is held for four days in July during the COVID-19 pandemic with 3,000 registrants from 75 countries. 41 The Foundation—working towards a cure—creates the Everest Awards , the largest grant mechanism to date, designed to drive transformative change. 2022 42 The first Virtual Spanish- Language Summit is held, attracting more than 350 attendees from 23 countries. The event is held for the next four years. 2024 43 The first International Symposium for community members—focused on “Living Better” with connective tissue conditions—is held in London. 2025 44 The Foundation changes its mission, vision, and tagline to better reflect an empowered community. It also launches its first podcast: Know. Connect. Thrive.

2016 34 After walks in Phoenix, Boston, Long Island, and Dallas in 2014, the formal Walk for Victory program is established as a flagship community and fundraising event for the organization. Ten years later, there are more than 24 annual walk events around the country. 2018 35 The first-ever Camp Victory is held for five days in Warm Springs, GA for children 5-18. The medically-supervised camp experience has since expanded into summer sessions for kids in Georgia and California, and two fall family camps. 2019 36 In October, the VEDS Movement is launched “to save lives and improve the quality of life” for people living with Vascular Ehlers-Danlos Syndrome. 2020 37 The Loeys-Dietz Syndrome Foundation officially becomes part of the Foundation, billed as a “great next step” for both organizations. 38 GenTAC becomes “powered by” the Marfan Foundation. In 2025, GenTAC is rebranded as the Genetic Aortic Network and becomes an official division of the Foundation. 39 Virtual support groups start during the COVID-19 pandemic.

2013 31 The organization undergoes a major rebrand – creating a new logo, tagline (“Know the Signs. Fight for Victory”), and name: it’s now officially the Marfan Foundation.

2015 32 Michael Weamer is

appointed President & CEO, ushering in a decade of transformative growth, expanding the Foundation’s global reach, strengthening its financial and organizational foundation, and broadening its mission to serve multiple genetic aortic and connective tissue conditions. developed in collaboration with top experts, explicitly state that “aortic valve-sparing surgery is preferred to aortic valve replacement” to avoid lifelong anticoagulation therapy, particularly in elective cases where the aortic root is 4.5–5.0 cm. 33 The Foundation’s new management guidelines,

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2026 We continue to expand our online impact—reaching 8.4M people via social media, generating 22.7M impressions for the first time, and driving 5M website interactions with our community members.

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