Connective Issues Fall 2025

Marfan Foundation Welcomes Stickler Community

This year, the Marfan Foundation expand ed its mission by adding educational pro gramming and support services for people living with Stickler syndrome - a milestone made possible through an agreement with Stickler Involved People, the nonprofit that served the Stickler community prior to sun setting their organization. Stickler syndrome is a genetic condition that a ff ects collagen throughout the body. Because collagen is a key component of connective tissue like bone, skin, and cartilage, Stickler syndrome is primarily characterized by problems with vision, joints, and hearing. Like Marfan syndrome, Stickler is an auto somal dominant genetic condition, meaning it can a ff ect both males or females (auto somal) and that its traits will appear if the a ff ected parent passes on the gene (domi nant). Stickler syndrome is also a progressive condition, so symptoms typically worsen with age. People with Stickler syndrome face ongoing challenges of living with a lifelong condition, including fatigue, pain, and other complications that can significantly a ff ect their quality of life.

 Leo, who wears hearing aids, undergoes routine testing

“The Marfan Foundation’s invitation to include Stickler families was incredibly meaningful and generous, and I jumped at the chance to finally meet other families impacted by Stickler,” Lissa said. With the hope of learning more and meeting others face-to-face, Lissa and her family attended the Foundation’s 40 th Conference this summer in Atlanta. “The entire conference, the people, the presentations, the kids’ program, even the family party, was so thoughtfully planned and beneficial for all of us,” she said. “But more than anything, it was the ability to truly CONNECT that made the biggest impact. I left the weekend feeling energized and part of an incredible community - I needed that so much!”

Get Involved in Stickler ✓ Sign up for a Walk for Victory near you at Marfan.org/walk ✓ Watch videos from our Stickler playlist on our YouTube channel @TheMarfanFoundation ✓ Subscribe to our emails at Marfan.org/subscribe ✓ Join our monthly Stickler support groupat Marfan.org/stickler-connect

 Leo at the Foundation’s 40 th Conference in July

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