A gratitude-filled reflection from VEDS Movement Director Ryan Rodarmer, MS
At the VEDS party and Houston Walk for Victory, Bella Marin shared something that stayed with me: “[The VEDS Movement community is] the (unchosen) chosen family support for many people who don’t have a large family to rely on. This community offers a bubble of understanding, no questions asked. It’s a privilege to get together and celebrate life despite living with terrible diseases.”
Our community showed up for one another in amazing ways in Houston during Walk for Victory weekend, starting Saturday night when more than 70 people gathered for the VEDS Party. Food, fun, old friends catching up, and new connections being made. The VEDS Movement exists because of our extraordinary community, people who keep charging forward — whether that means advocating for yourself when the path isn’t clear, holding onto hope on the days when hope is the hardest thing to hold, or living resilience not as a buzzword, but as a daily practice. The Party celebrates that.
The Walk brought a beautiful Houston day — cooler than years past, a welcome reprieve for a community that has learned to show up no matter the forecast. And when I looked out at the crowd, what I saw wasn’t a group defined by a diagnosis. I saw a community defined by who they are and all that they bring to one another. In a condition like VEDS, community isn’t a “nice-to-have.” It’s a lifeline. The connections forged here don’t just reduce isolation. They literally save lives, and they fuel everything we do at the Marfan Foundation and the VEDS Movement.
Community Leadership
Sofia and Alvaro De La Garza chaired this year’s Houston Walk for Victory — parents to Sofia Maria, the first in their family to have VEDS — and when Sofia and family joined us on stage, her words said it all.
“Being part of the VEDS community has changed everything for us,” Sofia shared. “What once felt lonely and overwhelming has become a journey filled with connection, compassion, and support.”
For someone newly diagnosed, her message was simple: “Breathe. You are not alone.”
Sofia relentlessly advocates, fundraises, educates, and uplifts across English and Spanish-speaking communities, breaking down barriers. She serves on our Steering Committee and was recently appointed as an advisor to our Board of Directors. Alvaro has been beside her every step of the way — we thank them both for their service to the VEDS community.
Morgan Jozwiak and Bella Marin also took the stage. Morgan, who serves on our Steering Committee, offered words that cut right to the heart: “Give yourself time and grace to grieve the diagnosis, but don’t turn away from those who care. Lean into them.”
Bella, whose mother Fran has been doing this work since Bella’s own diagnosis in 2004, raised her voice with power — a voice shaped by a lifetime inside the VEDS community.
Fran and Morgan show up, without fail, for anyone newly navigating a VEDS diagnosis, answer questions, and connect people with critical resources. They keep a finger on the pulse of this community, making sure no one who reaches out feels alone and that what the community needs shapes what we build. When Bella was diagnosed, Fran found herself navigating a condition that much of the medical community didn’t fully understand, with limited information and an overwhelming road ahead. Five months after that diagnosis, she attended her first Marfan Foundation Conference and met VEDS families who made her feel welcomed and supported when she needed it most. That experience changed everything. She has been paying it forward ever since, making sure every new family finds the same sense of belonging. She and her husband drive 11 hours to attend the Walk every year. In her words: “Every single mile is worth it.” And we are so glad she makes the drive.
Bella said: “Even though we are ‘VEDS veterans,’ showing up to the Walk each year only reinforces our dedication and commitment to the community. It means so much to be some of the first VEDS faces new families are meeting and seeing the hope shine in their eyes.”
First-Time Experiences
And then there were those arriving for the very first time. Among the crowd was Wendy Stephens, attending her first in-person VEDS event just months after her diagnosis in late 2025. Wendy’s path to that diagnosis had been years in the making — she had lived with a hypermobile EDS diagnosis and carried the weight of symptoms, including multiple aneurysms, that never quite added up. When a planned procedure prompted her to seek answers before moving forward, testing finally confirmed what she had long suspected: VEDS. She arrived in Houston as someone still finding her footing in a new reality, yet her reflection for others just beginning that journey was already powerful: “If you’re feeling alone right now, I want you to know, you’re not crazy, and you’re not imagining what your body is going through.” That a new community member already feels moved to reach back and reassure the next person behind her? That tells you everything about our VEDS Movement family.
Another new community member, Saber, attended the Walk with her partner and child, both living with VEDS, for their first in-person event. Though their family has lived with the diagnosis for a couple of years, it was only recently that they found their way to the larger community — and the difference has been immediate. “Reaching out to the VEDS Movement was the best decision we have made so far,” Saber shared. “We have made so many connections in such a short time.”
A Supportive Community
Huge thanks to Rachel Tays, who couldn’t be with us in Houston, but whose volunteerism could still be felt. Rachel’s husband and two sons live with VEDS, and Rachel is a vocal, tireless advocate and frequently the first person to reach out when someone receives a new diagnosis. Somehow, she finds families at the very beginning of their journey, before they’ve even had time to process what’s happening. I genuinely don’t know how she does it. We missed Rachel and her family at the Walk, and we want her to know she is seen and celebrated.
We’re deeply grateful for the providers who dedicate their lives to helping this community. Genetic counselor Taylor Dawson spoke on behalf of the Texas Children’s clinical team, and Dr. David Murdock was there in support. Dr. Joseph Coselli, who has long championed this community, took a moment on stage to specifically thank the VEDS community, a gesture that meant so much to Team VEDS. Thanks to Drs. Dianna Milewicz, Shaine Morris, and Siddharth Prakash, who couldn’t be with us at the event, but are wonderful champions for the VEDS and greater connective-tissue community, and we are grateful for all they give.
The VEDS Movement is thriving. Thank you to all who made our time together in Houston unforgettable.
— Ryan Rodarmer, MS, Director, The VEDS Movement at the Marfan Foundation
The VEDS Movement mission is to save lives and improve the quality of life of individuals with Vascular Ehlers-Danlos Syndrome (VEDS).