Jennie Aucoin traveled to the Marfan Foundation Conference in Atlanta in July of 2025 expecting to learn more about Marfan syndrome. She returned home with something she never expected: a sure-to-be lifelong friend who understands exactly what it’s like to live with the condition.
“It was my first conference and I traveled alone; I wasn’t sure what to expect,” said Jennie, who lives outside of New Orleans. “I had never met anyone else with Marfan in person. But as soon as I arrived, I felt a sense of comfort.”
Jennie threw herself into the conference, even volunteering to share her life story via video for the Foundation. During the event, a longtime community member and volunteer introduced her to fellow attendee Danielle Valdez of Albuquerque, thinking the two women had similar stories. She was right.
“We immediately hit it off like two long-lost sisters,” Jennie said.
Jennie and Danielle have a lot in common. Both were diagnosed with Marfan syndrome as young children because of spontaneous genetic mutations; no one else in their families has the condition. Despite having supportive families, both grew up feeling isolated by their diagnoses.
Jennie was diagnosed at age 3 after her mother noticed she couldn’t see well and was running into everything. She had dislocated lenses in both eyes and other common Marfan features.
“Growing up, I had very limited vision, but not a lot of severe health issues,” she said. “It was hard back then because they really didn’t know very much. My parents were told I wouldn’t live past age 30 and would never have children. But despite all the doom and gloom, here I am—and I have two kids.”
Danielle was diagnosed with early onset Marfan syndrome at 18 months. She is legally blind and has undergone two heart surgeries, with a third potentially on the horizon.
The pair spent the final days of the conference together—“talking about everything”—culminating in dinner on the 73rd floor of Atlanta’s famed Sun Dial Restaurant & Bar.
“I wish we had met sooner,” Danielle said. “We had so much fun!”
What began as a chance introduction at the conference quickly grew into the kind of friendship both women had spent their lives hoping to find. The connection continued long after they returned home, with regular phone calls, shared stories, and constant encouragement.
At the end of February, Jennie made the 18-hour trip to visit Danielle in Albuquerque.
“I made the drive in three days because I suffer from a lot of pain,” Jennie said. “It was a struggle, and I had to prepare medically for months, but it was worth every second. I could go on and on about how amazing the trip was for me! I stopped at Cadillac Ranch in Amarillo and spray painted #MarfanSyndrome because of course I had to spread awareness along the way too!
We finished the last day of Marfan Awareness Month by riding the Sandia Peak Tramway to watch the sunset over Albuquerque, and we were blessed with one of the best sunsets I’ve ever seen. Danielle is a true warrior and an inspiration to me, and I’m so thankful the conference brought us together.”
The friends can’t wait for their next reunion.
Danielle hopes to visit Louisiana for her birthday in December. After that, they’re already looking ahead to the Marfan Foundation Conference in Santa Clara, California, in July 2027.
“Oh, we’re already planning,” said Danielle. “Rumor has it there are already matching T-shirts in the works. It feels like I’ve known Jennie my entire life. It’s almost like she’s my long-lost twin, like we were switched at birth. I’m so grateful to have her in my life.”
Olivia Abel has been a strategic communications and editorial professional for more than 25 years. A passionate storyteller, she’s worked as a reporter at Vanity Fair and People magazines, written freelance business stories for The New York Times and spent a decade as Editor-in-Chief of Hudson Valley magazine. Olivia shares the stories of those affected by genetic aortic and vascular conditions in her current work as director of Integrated Marketing Communications at the Marfan Foundation.