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Janet Kaszonyi
Janet Kaszonyi serves as the Community Engagement & Advocacy Lead at the Tarlov Cyst Society, where she champions outreach, patient-voice initiatives, and creative community building. With over 30 years as an educator in elementary and secondary schools—including extensive work with special-needs students—Janet brings empathy, structure, and educational expertise to her volunteer leadership role.
A professional photographer for two decades and a longtime art instructor, Janet’s artistic spirit informs her approach: she sees advocacy as both a connection and a canvas. Fluent in English and American Sign Language, she believes in inclusive communication and creative problem-solving. As a mother and grandmother who has lived the complexities of chronic medical conditions (including Tarlov Cyst Disease), Janet is deeply committed to ensuring patients are heard, supported, and empowered.
Janet originated the Society’s petition on Change.org and played a key role in expanding our leadership team by connecting new volunteers. She now moderates the monthly patient support group and provides support for social media engagement, administrative tasks, and fundraising initiatives. With her loyalty, dedication, and creative energy, Janet is helping shape a future where patients don’t just feel seen—they feel supported, guided, and part of the change.