From July 10–13, attendees from 44 states and 10 countries gathered in Atlanta for the Foundation’s 40th Conference which centered on education, connection, and empowerment for individuals and families affected by Marfan syndrome, Loeys-Dietz syndrome (LDS), Vascular Ehlers-Danlos syndrome (VEDS), Stickler syndrome, and related conditions.
For Grace Meyers, 21, of Michigan, our Atlanta event was her seventh time taking part in the conference.
“It makes me really happy, it is truly the best weekend out of the entire year,” said Meyers, who lives with Marfan syndrome. “I just feel at home here.”
Meyers cited community connections and education as her primary reasons for coming back to Conference. “We just kind of talk and have conversations…we educate each other and just keep on learning and then we’re able to go out and spread awareness,” said Meyers.
Hosted in association with Children’s Healthcare of Atlanta (CHOA) and Emory Healthcare, the conference welcomed 681 registrants, including 130 children and teens who took part in age-based programming. About half of participants were first-time attendees.
One of those first-time attendees was Jennifer Aucoin, 50, of Louisiana. As a person living with first-generation Marfan syndrome who was diagnosed at age 3, Jennifer is the only person she knows of in her family living with the condition. The Atlanta Conference marked her first time meeting other people with Marfan and related conditions.
“I have gone my whole life, which has been 50 years, kind of like the oddball out. Where I live there’s not many specialists…I didn’t have anybody else to talk to about this,” said Jennifer.
Jennifer said she has had a “full life and two beautiful children” but a missing piece has been Marfan community connections. After numerous Marfan-related health issues especially over the past decade, Jennifer said “Being at Conference is going to…put things together for me and make me included. I’ll feel like I belong in this group whereas my whole life, I’ve been that outsider.”
Throughout the four-day event, 45 of the world’s leading medical experts, including cardiologists, surgeons, geneticists, orthopedists, and mental health professionals, generously volunteered their time to educate attendees and answer questions. The program kicked off with six General Session expert presentations followed by more than 60 breakout workshops focused on medical management, mental health, quality of life, and peer-to-peer support.
Diane Rich was a first-time Conference speaker. “I had the chance to connect with my audience not only as someone living with Loeys-Dietz Syndrome but also as a physical therapist. I never imagined that the clinical knowledge I’d gained would one day become part of my daily life. I was excited to share what I’d learned,” said Diane.
“The attendees were curious, hopeful, and perceptive, and I was humbled by their tenacity. The days were full of lectures, questions, hugs, shared stories, and the kind of laughter that only comes from mutual understanding. There’s something healing about being surrounded by people who truly see you,” said Diane.
In addition to the main conference, a free health fair was offered on July 10 and 11 at CHOA. Sixty-six participants, including Chris Underwood from Virginia, received screenings and personalized medical evaluations from top specialists.
“I wanted an opportunity to meet with some of the nation’s VEDS experts to confirm that my current status is what I am being told, and the care protocols are adequate for me,” said Chris, who plans to share the information he learned with this medical team in an effort to be a better advocate for himself and his care.
Thanks to the generosity of Foundation supporters, a record 185 attendees with financial need received scholarships to help cover registration and lodging costs, expanding the access to expert care that is so vital to our community.
One scholarship recipient said of the experience, “Being able to attend conference 2025 in Atlanta helped my granddaughter and me as she’s transitioning into adulthood and onto college, [and] she’s moving away in the weeks ahead. We were able to attend multiple sessions with professionals in the medical field along with parent/adult child peer leaders that will be beneficial at [this] stage in her life. We are so grateful for the opportunity given to attend Conference.”
Several sessions were offered in Spanish-language this year. One attendee, Víctor Daniél Solís de la Rosa, who is a native Spanish-speaker said after attending the Conference Health Fair, “With all my heart, I thank the Marfan Foundation for making one of my biggest wishes come true. I want to express my most sincere thanks to [staff person] Kathleen Bolton and [volunteer] Betsy Matarrita for their invaluable help and dedication.. Thanks to you and the unconditional love of my family, I managed to overcome one more obstacle in my life. We dream when we sleep, but this has been a true wish that has become reality today.”
The Foundation’s next in-person Conference will take place in 2027 in Northern California and will be offered in association with Stanford Healthcare. We will hold our Global Virtual Conference in 2026, aimed at increasing access to Foundation Conference resources domestically and world-wide.
Marfan Foundation President & CEO Michael L. Weamer said, “It is great to return to the West Coast for our next in-person Conference in 2027. I am certain it will be another shining moment for the Stanford team and the Marfan Foundation in serving our community. Onward!”
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.