It was the little touches that made the June 20 Well Kirtland Golf Fundraiser for the VEDS Movement so fun—and so meaningful, says Michelle Henderson, whose daughter, Lucy, age 9, lives with VEDS.
Approximately 120 guests played 18 holes at the St. Denis Golf Club in Chardon, Ohio. They putted for prizes, entered raffles, snacked on hot dogs, and enjoyed dinner afterward. But one of the tournament’s most unique and memorable features was the educational signs placed at each hole. Created by the VEDS Movement, each sign shared a nugget of information about VEDS. At the 16th hole, for example, the sign said: VEDS is caused by a change in the COL3A1 gene, which tells the body how to make a key building block of blood vessels and organs. A simple DNA test can confirm the diagnosis – and that confirmation unlocks life-saving medical care.
“So many people came up to me and said, ‘Wow, I had never even heard of VEDS,’” Michelle says. “So this was great for spreading awareness.”
The tournament raised $4,000 and was sponsored and organized by Gretchen Well, owner of the Well Kirtland bar in Kirtland, Ohio. But it was a team effort. Michelle wrote a letter and visited local businesses to ask for donations—and was thrilled by how many were willing to help.
“And don’t be afraid to reach out to the VEDS Movement and the Marfan Foundation,” she says. “Besides the signs, they provided bags, literature, lanyards—everything. It was really wonderful.”
And golf is just one way community members are turning their passions into opportunities to raise awareness and funds.
In June 2025, the De la Garza family, who are being honored at the 2026 Houston HeartWorks gala, organized a pickleball tournament in Brownsville, Texas, that raised a whopping $40,000 for the VEDS Movement. In addition to 40 teams battling it out on the pickleball court, the event featured a carnival, complete with rides, games, and raffles. “It’s so powerful when the community comes together, whether it is at a major gala or on the pickleball court,” says Sofia De La Garza. “We raised awareness, generated hope, and brought new people into the cause.” Sofia’s daughter, six-year-old Sofia Maria, was diagnosed with VEDS as an infant.
“It was amazing to see this event, led by their family and friends, and how it brought a community together,” says Kara Burke, Senior Director of Development at the Foundation. She added that the Foundation provided a photo backdrop with the VEDS Movement logo, as well as other branded giveaways. “There were probably more than 200 people there. It was just another way to build community, spread awareness and encourage others to make a difference.”
This year’s Pickleball Tournament is being held on November 7, 2026. Please reach out to Kara at kburke@marfan.org for more information or to register or make a donation.
Ready to give it a try?
“You don’t have to organize a 120-person golf tournament or raise $40,000 to make a difference,” says Kara. “Small-scale fundraisers can take many forms—and the Foundation is here to help.” Here are a few ways to get started:
- Start with something you love.
Golf, pickleball, a 5K, a birthday celebration—there’s no one right way to fundraise. “Think about an activity you enjoy and what might bring your friends, family or community together,” says Kara. “We have had bake sales, wine tastings, even a virtual cooking class.” - Set a goal.
Whether you raise $500, $1,000 or more, every dollar helps support the community. - Ask for help.
You don’t have to figure it all out on your own. “The Marfan Foundation can provide fundraising tools, materials, guidance, and other support to help bring your idea to life.” - Invite others to join you.
Friends, family, coworkers and local businesses may be eager to participate, donate or help spread the word once they understand why you’re doing it. “Don’t be afraid to reach out,” says Kara.
Have an idea? Questions? We’d love to help you bring it to life. Contact Kara at kburke@marfan.org.
