Author · Speaker · Patient Advocate
After more than 25 years in leadership, a rare disease diagnosis changed everything.
I’m what medicine calls a zebra: rare, dismissed, and often misunderstood.
Craniocervical Instability (CCI), Chiari Malformation, and Ehlers-Danlos Syndrome (hEDS) were my beginning, not my ending.
Reflections on rebuilding, agency, and becoming visible after life reroutes you.
Becoming Seen Together
Being seen restores steady ground.
This CCI awareness petition is our first collective act of visibility, so people navigating an often missed condition aren’t forced to find their footing alone.
If you are looking to book Monica for a speaking engagement, media appearance or professional collaboration, please reach out.