The VEDS Movement

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The VEDS Movement A community dedicated to raising awareness about Vascular Ehlers-Danlos Syndrome.

The Marfan Foundation (and its divisions including the VEDS Movement) drives research, education, and support while building community to save lives, improve outcomes, and empower all people living with Marfan, Loeys-Dietz, Vascular Ehlers-Danlos syndromes, and related conditions to thrive.



Community Guidelines and Disclaimer

The Marfan Foundation and its divisions are committed to maintaining a safe, respectful, and inclusive environment across all our digital platforms. To that end:

• Zero Tolerance Policy: We do not tolerate hate speech, harassment, personal attacks, discriminatory language, or disrespectful dialogue. Any content that violates these standards may be removed, and offending users may be blocked or reported.

• Shared Content Disclaimer: From time to time, we may share content created by our community members, including stories, testimonials, and social media posts. The views and opinions expressed in such content are those of the individuals and do not necessarily reflect the views, policies, or positions of The Marfan Foundation. By engaging with our digital platforms, you agree to abide by these guidelines and contribute positively to our community.

At Mercy Asylum Productions the V ALWAYS matters. We thank our dear friends for the ongoing VEDS advocacy and fundraisin...
10/24/2026

At Mercy Asylum Productions the V ALWAYS matters. We thank our dear friends for the ongoing VEDS advocacy and fundraising at every haunt! We’ve got a special spooky moment straight from Florida.

April Dawn Shinske, VEDS Movement and Marfan Foundation CCMDO, knows the V Matters “I go to work every day carrying the ...
10/23/2026

April Dawn Shinske, VEDS Movement and Marfan Foundation CCMDO, knows the V Matters “I go to work every day carrying the VEDS community in my heart. We’ll never stop fighting for you!”

10/23/2026
Make no mistake, the VEDS Movement and the Marfan Foundation are deeply committed to funding the most meritorious VEDS r...
10/23/2026

Make no mistake, the VEDS Movement and the Marfan Foundation are deeply committed to funding the most meritorious VEDS research. Our ultimate goal? A cure.

We've been powering VEDS research since 2018, and we are proud to announce two brand new grants. Learn more: https://marfan.org/2026/10/23/the-marfan-foundations-ongoing-commitment-to-veds-research/

VEDS Research Supported by The Marfan Foundation
- $100,000 | 2018 | Harry "Hal" C. Dietz, MD, Johns Hopkins School of Medicine: Studying genetic factors that influence aortic dissection in people with VEDS. Two-year Faculty Grant.
- $100,000 | 2020 | David Shreiber, PhD, Rutgers University: Investigating how specific collagen III mutations affect the structure and function of collagen in VEDS. Two-year Faculty Grant.

Current research with potential benefits for VEDS
- $100,000 | 2024 | Alexander Bashore, PhD, Icahn School of Medicine at Mount Sinai: Identifying potential biomarkers and cellular pathways involved in thoracic aortic aneurysms. Two-year Career Development Award. The investigator identified VEDS as one of the conditions that could benefit.
- $100,000 | 2025 | Dar Weiss, PhD, University of Denver: Investigating targeted aortic repair using lysyl oxidase (LOX)-responsive nanopolymers. Two-year Career Development Award. The investigator identified VEDS as one of the conditions that could benefit.

Additional ongoing research support
- $250,000 annually | Since 2003 | Harry C. Dietz, MD, Johns Hopkins: Annual laboratory funding supporting multiple research projects, including VEDS-related investigations.

New VEDS-specific research funding
- $250,000 | 2026 | Isabella Noelani Parson Welch Memorial Grants: Two new $125,000, two-year grants dedicated exclusively to VEDS research. Applications are open, with awards to be announced in 2027.

Address

22 Manhasset Avenue
Port Washington, NY
11050

Telephone

+18008627326

Website

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