The story behind the work
Eight years of lived experience.
My journey with vorasidenib began in a Phase 1 clinical trial. It became an education in treatment, responsibility, resilience, and the value of a patient’s voice.
In my own words
Why I became an Expert Patient
In 2018, I joined a small group of patients in the vorasidenib (AG-881) Phase 1, Cohort 2 investigational drug trial.
Only a few patients worldwide were enrolled in this cohort. Today, after more than 91 cycles and thousands of daily doses, I may be one of the last of those original participants still taking the treatment.
I have always believed in taking a high degree of personal responsibility for understanding “my” drug—asking questions, paying attention, and learning from each stage of the experience. Clinical data tells an essential part of the story. Lived experience reveals how treatment fits into the days, decisions, relationships, and realities of a person’s life.
Those additional years have given me something I feel responsible for sharing: a perspective that may help patients feel understood and help professionals see beyond the treatment plan to the person living it.
The journey so far
Experience measured in more than time.
2018
Joined the vorasidenib Phase 1, Cohort 2 investigational drug trial.
91+ cycles
Years of daily treatment, observation, questions, learning, and adaptation.
Today
Turning personal experience into education, advocacy, and meaningful dialogue.
Always a thriver
My experience is personal.
Sharing it is purposeful.
Expert Patient LLC exists to bring the human perspective into conversations that shape patient care, education, research, and support.
Thriving always,
Lynton
Expert Patient LLC offers lived-experience insights and patient-centered support for complex health journeys.
Company
Contact
PO Box 210001
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