Mental health, mini events, research updates, and more!
Focus on Mental Health
From learning to let go of what can't be controlled to asking “Now what?”, two mental health professionals living with VEDS share the personal lessons that have helped them navigate diagnosis, uncertainty, and even finding the right therapist. “The mental health burden of living with VEDS is profound,” says Karen MountainJohnson.
Fundraising, Your Way
Foundation events like walks and galas bring our community together—but they’re not the only way to make an impact. Get inspired by these VEDS community members who are turning hobbies like golf and pickleball, celebrations, and everyday activities into opportunities to make a difference. Want to give it a try?
VEDS RESEARCH UPDATE with
Hal Dietz, MD
VEDS IN MIDLIFE AND BEYOND with Melissa Russo, MD
MANAGING CHRONIC HYPERVIGILENCE in VEDS with Melissa Flint, PsyD, FT, CCPT
MANAGING THE PSYCHOLOGICAL IMPACT OF VEDS IN CHILDREN & ADOLESCENTS with Albert Freedman, PhD
VEDS Community Connects at Conference
More than 1,800 people from 55 countries joined us for June’s four-day 2026 Global Virtual Conference of the Marfan Foundation, featuring more than 50 sessions on research, medical care, mental health and more. If you missed it, there’s still plenty of VEDS content to catch up on. Experts shared their knowledge and perspectives on topics ranging from hormones and aging to the unique needs of adolescents living with the condition. Check out these four VEDS-centric YouTube videos.
Progress Toward a Potential VEDS Treatment
As many in the VEDS community know, the beta-blocker celiprolol has been studied as a potential treatment for VEDS for years (with the goal of reducing the risk of serious vascular events). The Phase 3 DISCOVER trial continues to move forward, with enrollment growing 50% since late 2025, from 44 participants to 66 today. Zevra Therapeutics also plans to continue discussions with the FDA about ways to potentially accelerate the drug’s development.
CONNECT WITH YOUR COMMUNITY!
From signature galas and Walk for Victory events to expert-led symposiums and virtual support groups, there's something for everyone—no matter your age or where you live. Join us in person or online and find your people! Visit marfan.org/calendar for a complete listing of events. #KnowConnectThrive
Walk for Victory Turns 10!
We’re celebrating a decade of community, connection, and progress for people affected by genetic aortic and vascular conditions. Stay tuned—there’s plenty more to come as we mark this milestone year! And there are still two chances to be part of Walk for Victory this fall: Cleveland (9/19) and St. Louis (10/18).
Check out the 2027 Walk Calendar!
Join Us at an Upcoming Walk for Victory Event Near You
