Author · Speaker · Rare Disease Patient Advocate
After more than 25 years in leadership, a rare disease diagnosis unraveled the life I thought I knew.
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,
They gave names to years of searching.
Reflections on rebuilding, agency, and becoming visible after life reroutes you.
A rare disease memoir of unraveling and becoming.
First book in the You Might Be a Zebra series
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, or left searching for answers without language for what they are living through.
Too many people are still piecing this together on their own, moving from specialist to specialist, fighting to be understood, and trying to name what medicine still too often overlooks.
This work is about recognition, access, and change.
For the people living it now, and for the families coming behind them, being seen is where change begins.
If you are looking to book Monica for a speaking engagement, media appearance or professional collaboration, please reach out. Topics include rare disease, chronic illness, patient advocacy, and the lived experience of CCI, Chiari, and hEDS.