Patient Voices: Reagan Warren - CMT Summit Nashville 2025

Описание: Rare diseases often remain in the shadows until someone brave enough steps forward to share their reality. Sixteen-year-old Regan Warren does exactly this as she revisits her journey with Charcot-Marie-Tooth disease (CMT1A) seven years after first sharing her story as a nine-year-old child.

Standing before us as a sophomore at Deerfield Academy, Regan delivers a powerful sequel to her original testimony. Since her first appearance in 2018, her condition has dramatically progressed, resulting in eight surgeries between the ages of five and thirteen—including hip surgery, multiple foot reconstructions, and spinal fusion. More devastating still, she lost her father to CMT-related respiratory complications, the one person who truly understood her daily struggles with this rare neurological disease.

"CMT is a disease of the mind, body and soul," Regan explains, revealing the often-unseen impacts of her condition. Beyond the visible mobility challenges that once confined her to a power wheelchair for two years, she candidly discusses the emotional toll—the relentless bullying, the shame, the guilt, and the constant anxiety about what tomorrow might bring. With remarkable clarity, she reminds us that one in 2,500 people wake up fighting the same battles she does, many of whom experience significant progression during childhood and adolescence.

Regan's message transcends mere awareness; it's an urgent call to action. "We cannot wait in hopes that something might eventually come. The time is now," she declares. She challenges everyone to collaborate through contributions of time, talent, and treasure to advance research, develop proper clinical trials, and forge connections between patients, institutions, and industry. Join Regan in her quest to ensure there will never be another story like hers or her father's. Together, we can help write a trilogy with a happy ending.