Shannon Burkoth

Before her diagnosis of a rare neurological disease in 2010, Shannon was a clinical manager at a seventy-seven chair, state of the art dental clinic with all the specialties under one roof. In this role she was responsible for a large staff of dental assistants and administrative personnel. She was responsible for staff training, osha compliance, inventory control, budgets, schedules, team building, coordination of insurance benefits, and community outreach. She also served on the corporate quality council, participated in union contract negotiations, implemented the integration of digital radiology and was a Red Cross certified CPR Instructor corporate wide. She loved the hustle!


After her diagnosis and failed treatment options, Shannon fell into a depression and felt lost. She saw a gap in education and awareness and engulfed herself in learning and participating in her community, that’s when she discovered advocacy! 


She has been fortunate to have had new therapies that have allowed her the opportunity to redefine herself and looks forward to working towards providing this opportunity to others. She is empathetic, hopeful, and knows first hand the experience of a prolonged diagnostic odyssey and what comes after. Advocacy has empowered her to help make a difference in a world she never knew existed.


Shannon now uses her experience from healthcare & business management and passion & knowledge of the rare disease landscape to consult in efforts that will be meaningful to the rare community. Shannon sees the strength in working together in the rare space and being a champion for each other in our advocacy efforts utilizing both limited and valuable resources. 30 million strong is a powerful number! 


Shannon is a trained speaker and program mentor for Project-Sleep’s Rising Voices of Narcolepsy and a member of the Rare Advocacy Movement and the Narcolepsy Network. Shannon’s advocacy efforts include speaking at nursing schools and conferences, consulting on patient engagement & market research materials, facilitating family meetups, and has participated on grant review committees and early access programs.


Shannon advocates locally, nationally and internationally.

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The Rare Advocacy Movement (RAM) is a rare disease focused community advocacy initiative focused on addressing the issues that affect the real world people of the rare disease community.  RAM serves as a community-based professional network and Center of Insight (COI) for rare disease focused stakeholders seeking authentic connections and unadulterated community insights. The RAM membership is comprised of a network of patient advocacy community expert professionals that have vowed to abide by the established Code of Conduct for Membership. As a result, every current RAM member has made a public vow to always act in the best interest of the rare disease community.