Connective Issues Spring 2024

Friends Unite to Educate Community

Kristen and Christy, from Huntsville, TX, formed a quick bond after learning their teen boys shared the same rare medical condition, Loeys-Dietz syndrome (LDS). Wanting to bring their community together and shed light on LDS, they teamed up to organize a volunteer-led walk in Huntsville to benefit and support the Houston Walk for Victory, which was held on the same day. Kristen and her 17-year-old son Carson, who was diagnosed with LDS in 2021, first

★ A Fun, Educational Event Pooling their resources with help from the Foundation’s Walk team, Kristen and Christy pulled o ff a successful event. Over 90 supporters, including friends and

family members, gathered at Kristen’s mother’s house for a day of community and awareness. The event featured a one mile walk, games, and music. Attendees also took part in an educational multiple choice quiz about Loeys-Dietz, with prizes for participants. Answers were found on laminate fact sheets hung around the yard. “I always try to be positive, so I was concerned some of the information on the quiz was too negative,” said Kristen. “But you can’t hide from the truth, and sharing the signs and details can save a life.” ★ Inspiring Others to Make an Impact Kristen and Christy hope their e ff orts will encourage others to take action to spread awareness and foster community spirit. For people who may be thinking about hosting an event, Kristen advises to start small. “Don’t get yourself overwhelmed trying to host a grand event,” she said. “Have a simple plan - you can always add to it - and recruit people to help. Most importantly, make it fun, create excitement, and help create more awareness!” CONNECT WITH COMMUNITY Join us for an upcoming Walk for Victory! June 1 : NewYork

learned about the Houston Walk for Victory from their cardiologist, Dr. Shaine Morris. They created a team and drove over an hour to attend last year’s walk. Despite their e ff orts, turn-out for their team was lower than expected, prompting Kristen to think about organizing something closer to home. “I was looking for ways to get Carson connected and make new friends,” said Kristen. “We were excited to have a team, but so many couldn’t make it the day of the walk. That’s when the idea hit me that I could plan a walk in my hometown.” ★ Close Connections In 2023, Kristen learned that another student, Cyle, who went to same school as her son, also had a connective-tissue condition. She immediately reached out to Cyle’s mom, Christy, with support and materials, including a bag filled with information from the Foundation’s 2023 conference in Chicago. The moms quickly formed a supportive bond over parenting sons with the condition. Kristen soon asked Christy to join her to organize a walk in Huntsville in conjunction with the 2024 Houston Walk for Victory. “We come from such a small town with a school of about 450 kids. It was unbelievable and what were the chances?” Christy said. “I thought, our community has two kids - we need to do this.”

June22 : Iowa (Des Moines) June23 : Michigan (East Lansing)

June2 : Boston June8 : Chicago June8 : Pacific Northwest (Portland)

June 15 : Milwaukee June 15 : Philadelphia

View all Walk for Victory events at Marfan.org/walk .

If you are interested in starting a fundraiser that unites your community and spreads awareness, we can help! Please contact Kim Huddleston, Senior Vice President of Development, at khuddleston@marfan.org.

9

Spring 2024