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Sherri Jones
Sherri Jones is the founder of the Tarlov Cyst Society—a journalist, advocate, and quiet force for change who turned a personal health crisis into a global movement for recognition and reform.
Diagnosed with Tarlov Cyst Disease in 2010 after a lifelong search for answers, Sherri discovered firsthand how misunderstood, underdiagnosed, and dismissed this condition truly is. Rather than accept silence, she took action—building peer support groups, launching international awareness efforts, and connecting patients from around the world.
With a background in journalism, public relations, and digital media, Sherri uses her voice and skillset to challenge medical dismissal, simplify complex information, and inspire others to become advocates for themselves and their community. Her work spans research, storytelling, education, and system-level change.
Sherri isn’t just raising awareness—she’s raising the bar for how rare disease patients are seen, supported, and empowered. Through the Tarlov Cyst Society, she continues to lead with empathy, truth, and an unshakable belief that all patients deserve to be heard.