Shining a Global Spotlight on Marfan, Loeys-Dietz, Vascular Ehlers-Danlos, and Stickler Syndromes Through the Power of Team Victory
Two cities. Twelve runners. One extraordinary mission. This fall, the Marfan Foundation’s Team Victory went the distance on a global stage — running in Berlin and New York City to raise more than $65,000 for life-saving research and to shine a worldwide spotlight on Marfan, Loeys-Dietz (LDS), and VEDS.
They ran for different reasons and to honor loved ones. Some were seasoned marathoners, others first-timers, but they were united by one thing: purpose.
Berlin Marathon: A Historic Milestone for the Marfan Foundation
A mighty team of three made history by running in the BMW Berlin Marathon on September 21; it was the Foundation’s very first international marathon. Their combined efforts brought in $10,600.
- Robyn Goodman ran for her two sons, Preston and Simon, whom she shares with Sinclair Li, a Foundation Board Member. “The only thing that motivated me enough to actually run the marathon was doing it for the Marfan Foundation,” she said. “When I hit the wall around mile 21, I reminded myself that those affected by these conditions endure so much more than I ever could.”
- Monica Aliaga-Laud’s son Milan lives with Loeys-Dietz syndrome (LDS). “These [connective tissue] conditions often go unseen, but the strength and resilience of those who live with them every day deserve to be recognized,” she said. “Every mile I ran was a step toward raising awareness, hope, and support for a brighter future for my son and so many others.”
- Dan Huddleston, MD, the husband of the Foundation’s Senior VP of Development, Kim, combined a personal challenge with a professional mission. “This was a unique way for me to push myself and create a goal,” he said. “As a physician scientist, it was also a way for me to raise critical funding for the Marfan Foundation.
On to the Big Apple: Nine NYC Marathon Runners, One Shared Purpose
November 4 marked the biggest New York City Marathon in history — it was also a big day for Team Victory’s nine runners: Meg Barnes, Jacob Prunier, Emily Moore, Lacie Bedwell, Dave Hill, Alvaro de la Garza, Elva Prohens, Allison Pullins, and Neal Richardson. Under bright skies and near-perfect running conditions, they took on the legendary 26.2-mile challenge, raising more than $55,000 to support life-saving programs and research.
Why Team Victory Runners Support Marfan, Loeys-Dietz, and VEDS:
- This was about something bigger than myself,” said Alvaro de la Garza, who ran for his five-year-old daughter, Sofia Maria, who lives with Vascular Ehlers-Danlos Syndrome (VEDS). After a difficult marathon in 2018, he had sworn off these long races, but inspired by his wife, who ran for Team Victory in 2023, he gave it another shot. “The difference was night and day. This time I was running for the Foundation — to raise awareness and funds. And for my daughter. Her strength and her resilience motivated me to keep going.”
- Elva Prohens, the Foundation’s administrative office manager was “riding high” for days after completing the race. She had recently run in two other marathons — Philadelphia and Paris — but found this to be more meaningful. “This is the first time I did fundraising,” she said. “I kept thinking about the people I’ve met through the Foundation: colleagues who are affected; people I’ve met at conferences; parents who are mourning the loss of a child and also caring for grandchildren. It’s truly an amazing community.”
- This was the second Team Victory marathon for Allison Pullins and her husband, Neal Richardson. These races are deeply personal: their son, James, 10, was diagnosed with Marfan syndrome seven years ago. “We do as much as we can with the Foundation to support James, but also because we are very motivated to find a cure for Marfan and other connective tissue conditions. We’ve lost friends. So we are here to save lives and raise awareness. We feel a real urgency about this.”
What’s Next for Team Victory:
Every step taken by Team Victory helps raise essential awareness of genetic aortic and vascular conditions such as Marfan syndrome, Loeys–Dietz syndrome (LDS), Vascular Ehlers-Danlos syndrome (VEDS) and Stickler syndrome—rare yet serious connective tissue disorders that often go undiagnosed. These conditions can affect the aorta, blood vessels, bones, eyes, and other organs, making early recognition, specialized medical care, and ongoing research critical. By elevating these conditions on a global stage, our runners are not only funding life-saving research but also helping families around the world find answers, support, and hope.
How You Can Get Involved
- Paris Marathon – April 12, 2026: Join the Team
Imagine running past such iconic landmarks like the Arc de Triomphe and the Champs-Élysées. A few spots are still available. If you or someone you know would like to run for the Marfan Foundation on this global stage, reach out to Alyssa today at aaieello@marfan.org. - Walk for Victory – Spring and Fall: Participate in a City Near You
Join one of our non-athletic Walk for Victory community-gathering events across the country. - Your Donation Helps Save Lives
When you give to the Marfan Foundation, you’re supporting families facing Marfan syndrome, Loeys-Dietz syndrome, VEDS, Stickler syndrome and other connective tissue conditions. Your generosity funds vital research, expands community support, and fuels the mission to ensure everyone with a genetic aortic or vascular condition can live a longer, safer life. Give now to power research and education.
What is Marfan syndrome? Marfan syndrome is a genetic condition that affects the body’s connective tissue. Connective tissue holds all the body’s cells, organs and tissue together. It also plays an important role in helping the body grow and develop properly.
What is Loeys-Dietz syndrome (LDS)? Loeys-Dietz syndrome is a genetic condition of the body’s connective tissue. It has some features in common with Marfan syndrome, but it also has some important differences.
What is Vascular Ehlers-Danlos syndrome (VEDS)? VEDS is caused by changes in the gene called COL3A1 that tells the body how to make collagen III. These mutations can result in faulty collagen III throughout the body or a reduction in the amount of normal collagen III in the body (depending on the mutation type). This creates the features and medical problems associated with VEDS.
What is Stickler syndrome? Stickler syndrome is a group of genetic conditions that affects connective tissue, specifically collagen. The condition is characterized by facial abnormalities, ocular problems, hearing loss, and joint problems. The Marfan Foundation welcomes those previously affiliated with Stickler Involved People — and anyone impacted by Stickler syndrome — to the Foundation family.
The Marfan Foundation is a nonprofit organization that saves lives and improves the quality of life of individuals with genetic aortic and vascular conditions including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. Our vision is a world in which everyone with genetic aortic and vascular conditions can live their best life.