VEDS Action Month, Steering Committee, and more!
VEDS Action Month is Coming Soon
Tell the world "The V Matters"!
Take Action Today to Make October OUR MONTH of Action
October is VEDS Action Month, and we need you! Help us tell the world why the V Matters to YOU! Here's how:
Share Your Photo: Grab a washable red marker or paint and make the 'V' like Kristi. Then, share why the "V" matters to you! Post on your social media with #TheVMatters or tag us @vedsmovement. You can also send us your photo and caption here, and we'll post it on ours.
T-Shirt Design Submissions: Why does the V in VEDS matter to you? Share your answer through a creative t-shirt design and submit here. The winning design will be available through our store! We'll share all submitted designs on our site, too!
Share Your Story: October is our chance to tell the world why the V Matters to each of us! You can tell us about getting diagnosed (and barriers), sometimes not feeling heard in medical settings, how confusion with other hypermobility disorders impacts you; thriving with VEDS (at work, through hobbies, and in daily life); or how meeting others in the community has impacted you. We'll share as many stories as we can throughout the month. Email here or share a video here.
Proclaim VEDS Action Month in Every State: Reach out to your government officials to secure a state proclamation for VEDS Action Month. Learn more
New VEDS Resources to Support YOU
We've got new resources to help improve emergency care and provide crucial support for our community.
VEDS911.com: Explore our new life-saving mobile site for first responders. We encourage you to share it with your local emergency personnel.
Psychological Considerations in VEDS: Download our new guide to help mental health professionals better understand and support the unique challenges of living with VEDS.
New Emergency Wallet Card: Download the redesigned card that gives medical personnel critical information quickly in a crisis.
VEDS Community Unites at Conference
The energy of the VEDS Movement at the Marfan Foundation's 40th Conference was powerful! The VEDS mixer was a highlight, where old friends could catch up and first-time attendees were welcomed. Conference also provided valuable opportunities to learn from top medical experts from across the country.
Read Chris Underwood's story about experiencing the Health Fair at Conference and his chance to "meet with some of the nation's VEDS experts."
Our next Conferences will be Virtual in 2026, and in-person in Stanford in 2027.
Meet the Co-Chairs of the VEDS Movement Steering Committee
Drawing from their lived experiences, Dominick Corso and Kristi Posival are leading with a passion for practical action and clear communication. They are dedicated to the mission of saving lives and empowering individuals by amplifying community voices and ensuring everyone has access to knowledgeable care. Their key goals include harnessing the community's energy and fostering collaboration between community members, researchers, and healthcare providers to improve outcomes for everyone with VEDS.
Upcoming Events
September
13 – Cleveland Walk for Victory
19-26 – Aortic Dissection Awareness Week
19-21 – Camp Victory for Families: GA
21 – Berlin Marathon (Foundation team full)
October is VEDS Action Month!
5 – Indiana Walk for Victory
24-26 – Camp Victory for Families: CA
25 – Cincinnati Regional Symposium: Living Better with Marfan, Loeys-Dietz, and VEDS
26 – St. Louis Walk for Victory
November
2 – NYC Marathon (Foundation team full)
11 – UnCorked NYC (details coming soon)
14 – Houston HeartWorks Gala
ICYMI: New GI Resource
GI specialist Tony Guerrerio, MD, PhD, has helped the Foundation develop a downloadable resource that addresses key gastrointestinal issues affecting the VEDS community. This accessible Q&A covers common concerns like abdominal pain and diverticulosis, explains risk factors related to the fragile bowel wall, and outlines management strategies, such as careful monitoring and the importance of a VEDS-aware medical team.
We welcome your feedback and suggestions for future issues - just reply to email us!
