Team Victory is gearing up for the 50th NYC Marathon a week from today. After nearly 40 years, David Barnes is lacing up for another marathon — and he can’t wait for Nov. 1! This time, he’s running for family. 💜 "My wife and two of my daughters live with the challenges of VEDS every day, as do several other members of my family," he says. "As such, anything that I can do to help is worth the effort. I run for them, and for all others afflicted with connective tissue disorders." Go David!! @nyc #TheMarfanFoundation #TheVEDSMovement #Marfan #LoeysDietz #VEDS #VEDSActionMonth

In the early part of October, the Marfan Foundation convened the largest scientific meeting in our 45-year history: Science in Spain. Meet Iván Alarcon-Ruiz, one of a small group of early-career researchers selected to receive a scholarship to attend the four-day conference in Barcelona. He is studying how: Targeting Fibronectin Accumulation Reverses Marfan Syndrome-Related Aortic Disease in Mice. Learn more: marfan.org/2026/09/28/meet-t… Research is moving us closer to better treatments and better futures for people living with Marfan and related conditions. 💜 Support research at marfan.org/impact

Because every child living with Marfan, Loeys-Dietz, VEDS, Stickler or a related condition deserves a bright future. Support the 2026 Marfan Foundation Research & Education drive: marfan.org/impact Right now, we'll triple your impact, thanks to a generous matching gift. If you give $25 dollars, you'll have a $75 impact! And 83 cents of every dollar goes right to our mission - that's 8 cents more than the average outstanding non-profit. #KnowConnectThrive #TheMarfanFoundation #TheVEDSMovement #LoeysDietzSyndromeFoundation #SticklerCircle

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: marfan.org/2026/10/23/the-ma… 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. #TheVMatters #Research #VEDSResearch #TheVEDSMovement #TheMarfanFoundation #Research

The V Matters to Marfan Foundation & VEDS Movement Help Center Manager Kathleen: "The V matters because for people with VEDS - seconds matter." #VEDS #TheVMatters #TheVEDSMovement #VEDSActionMonth

VEDS Movement and Marfan Foundation volunteer Maia Fleener turned her experience into action. DuPage County in Illinois has officially named October National VEDS Action Month! Thank you for raising awareness for VEDS and making a difference for our community. Thank you, Maia! ❤️ and thank you DuPage County! #TheVMatters #VEDS #VEDSActionMonth

The V Matters to VEDS Movement & Marfan Foundation Director, Integrated Marketing Communications Olivia Abel "because behind every diagnosis is a person, family, and a story that deserves to be heard." #TheVMatters #VEDSActionMonth #TheVEDSMovement #TheMarfanFoundation #VEDS

The V Matters to VEDS Movement and Marfan Foundation President and CEO Michael Weamer “because every single person living with VEDS deserves hopeful tomorrows, quality of life, timely treatment, and to be heard, believed, and supported. And everyone who has experienced loss due to VEDS deserves to know they are not alone. We are here.” #TheVMatters #VEDS #VEDSActionMonth #TheVEDSMovement #TheMarfanFoundation

"The V matters because our experiences matter, our futures matter, and our lives matter." Read more about why the V Matters to Isabella: marfan.org/blog/why-the-v-ma… Tell the world why the V Matters to you. Comment or tag the VEDS Movement in your post. #TheVMatters #VEDS #VEDSActionMonth

Join our VEDS Movement Director Ryan in telling the world that #TheVMatters - today and every day. #VEDSActionMonth #VEDS Looking for the photo frame? Find it here: claude.ai/artifact/ESorfiY11…

Tomorrow, Friday 10/23, is the big day. Wear Red, and show us your V hands! Tell the world why the V Matters to you during VEDS Action Month! Every story matters! Post your photo in the comments with the hashtag, #TheVMatters. Tag the VEDS Movement or send your images to [email protected] Together, we can raise awareness one photo at a time! Here's a 2025 throwback to our Marfan Foundation Board Chair Bert Medina showing his support.

We gathered hundreds of leading aortic researchers in Barcelona this month for Science in Spain. Meet Bita Salamat, M.D., one of 20 early-career researchers selected to receive a scholarship to attend the four-day conference. Her research is examining how the aortic root changes over time in children with Marfan syndrome—and whether its size at the start makes a difference. Dr. Salamat's work examines more piece of the puzzle in understanding aortic disease in Marfan syndrome. 💜 Learn more: marfan.org/2026/09/28/meet-t… Want to advance research? Visit marfan.org/impact

We know it’s a few days early, but we are excited to get started with this throwback from last year starring VEDs Movement and Marfan Foundation Professional Advisory Board member Dr. Hal Dietz! Show us why the “V” matters to you by sharing a photo of yourself making the V sign just like this. Whether it’s digitally, with paint, or any creative way you can imagine, we can’t wait to see you "paint" your hand red and hear why the “V” matters to you! #VEDSActionMonth #TheVMatters

You bring the knowledge. VEDS911.com helps you share it with your care team. Three easy ways to share: → Print it: click “Print” on VEDS911.com for a printable version → Email the link → Show the QR code at your next appointment Not sure what to say? Try: “I have VEDS. This site has emergency guidance. Could you add it to my chart?” Ideas for sharing: your primary care doctor, specialists, local ER or urgent care, local firehouse or EMTs, your child’s school nurse, or your coach or athletic trainer. Are you in? Comment “Sharing” below. #TheVMatters #VEDSActionMonth

This Friday, October 23rd, is the V Matters Day hosted by the VEDS Movement. ❤️ Wear red if you can 🖌️ Take a pic with your hand in a V shape, "painted" red IRL or digitally 👍Post and share why the V matters to you - tag the VEDS Movement or send your image to [email protected] and we'll post for you You can also our easy tool to frame your pic: claude.ai/artifact/ESorfiY11… Spread the word! #TheVMatters #TheVEDSMovement #VEDS

200,000 life-saving dollars!!! At the St. Louis Walk for Victory, Dr. Alan Braverman (our Board-Chair elect) announced that the event had its most successful year EVER! 83 cents on every one of those dollars powers research, education, support group, resources, Camp Victory and more - that's 8 cents more than the average outstanding non-profit. THANK YOU to our St. Louis community! You did it! Together, you're fueling hope for the Marfan, Loeys-Dietz, VEDS, Stickler and related conditions communities. HOORAY!

We recently convened researchers and clinicians from around the world in Barcelona for Science in Spain. 🔬 Meet Emily Bramel, one of a small group of early-career researchers selected to receive a scholarship to attend the four-day conference in Barcelona. She found that a gene that drives inflammation may make the aortic root especially vulnerable to aneurysm in Loeys-Dietz syndrome. Learn more: marfan.org/2026/09/28/meet-t… Research is unlocking new possibilities for people living with Marfan and related conditions. 💜 Help move that work forward at marfan.org/impact #ScienceinSpain #LoeysDietz #LoeysDietzSyndromeFoundation #TheMarfanFoundation #Research&Education

First responders and emergency medical teams: please save this to save a life: VEDS911.com. It's real-time guidance for Vascular Ehlers-Danlos syndrome (VEDS) emergencies, built for you. It works on a phone and is made for use in the moment. It includes a hands-free guidance line: 470-563-8337 Save. Share. Save Lives: VEDS911.com People living with VEDS are at high-risk in a multitude of ways due to vascular and organ fragility. The wrong move can be life-changing. Delays can be fatal. When someone tells you they have VEDS or VASCULAR Ehlers-Danlos syndrome, believe them. #TheVMatters #VEDSActionMonth #VEDS #EMTs #EmergencyMedicine #Nursing #FirstResponders #Firefighters #Police

Team Victory is taking on the 50th NYC Marathon! Natalia De la Garza is running for her six-year-old niece who was born with Vascular Ehlers-Danlos Syndrome (VEDS). "Sofía María is so much more than her diagnosis. She is smart, joyful, loving, and above all, incredibly brave. Her smile lights up every room, and her strength inspires everyone who knows her. I will be running all 26.2 miles to help give her, and every person living with VEDS, hope for a brighter and healthier future." Support Natalia and Team Victory: give.marfan.org/fundraiser/7… #VEDS @tcsnycmarathon #TheVEDSMovement #TheVMatters #TheMarfanFoundation

Scientists around the globe are working tirelessly on behalf of the VEDS community to advance research progress. And, they’re being convened by the Marfan Foundation and its division: the VEDS Movement. Learn more: marfan.org/2026/10/17/veds-t… #VEDS #Research #ScienceinSpain #VEDSResearch #TheVEDSMovement #TheMarfanFoundation #VEDSActionMonth