Lived experience • Patient advocacy
When experience becomes expertise.
Eight years living with vorasidenib has given me a perspective few people share. Expert Patient LLC turns that lived experience into practical insight for patients, caregivers, clinicians, researchers, and collaborators.
9 years
on vorasidenib—and counting
8 years
on vorasidenib—and counting
Phase 1
Cohort 2 trial participant
91+ cycles
of lived treatment experience
2,548+ doses
and a deeply personal perspective
Phase 1
Cohort 2 trial participant
91+ cycles
of lived treatment experience
2,548+ doses
and a deeply personal perspective
The story behind the work
A patient’s voice belongs in the room.
In 2018, I joined a small group of patients in the vorasidenib (AG-881) Phase 1, Cohort 2 investigational drug trial. Today, I may be one of the last of those 25 participants still taking the treatment.
I believe in taking a high degree of personal responsibility in understanding “my” drug. That curiosity—and the seven additional years of life I have experienced—shaped Expert Patient LLC: a platform for sharing what long-term treatment truly looks and feels like beyond the data points.
My aim is to help create better conversations, more informed decisions, and meaningful collaboration across the brain-tumor community.
Thriving always,
Lynton
How I can contribute
Lived insight, put to work.
Every collaboration begins with listening. These are the spaces where my experience can add a clear, human perspective.
Patient perspective
First-hand insight into the realities, questions, milestones, and responsibilities of long-term treatment.
Education & conversation
Thoughtful participation in webinars, panels, interviews, and patient-focused learning initiatives.
Meaningful collaboration
Bringing a lived-experience lens to ideas that serve patients, caregivers, researchers, and clinical teams.
Featured conversations
Learn alongside me.
UCSF webinar
A conversation about vorasidenib
Patient experience
Hear more of my story
Have an idea?
Let’s make the patient voice part of the work.
If you see an opportunity for collaboration, education, research, or conversation, I’d be glad to hear about it.
Expert Patient LLC offers lived-experience insights and patient-centered support for complex health journeys.
Company
Contact
PO Box 210001
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