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Author · Speaker · Rare Disease Patient Advocate

From the boardroom to a neck brace.

For more than 25 years, I led global teams in audit, governance, and tech. Then a rare disease unraveled the life I knew.

I’m what medicine calls a zebra: rare and routinely dismissed.

From the boardroom to a neck brace.

For more than 25 years, I led global teams in audit, governance, and tech. Then a rare disease unraveled the life I knew.

I’m what medicine calls a zebra: rare and routinely dismissed.

From the boardroom to a neck brace.

For more than 25 years, I led global teams in audit, governance, and tech. Then a rare disease unraveled the life I knew.

I’m what medicine calls a zebra: rare and routinely dismissed.

Searching for CCI, hEDS, Chiari resources

Reflections on the aftermath

About the memoir

Rare Unveiled: A Memoir

20 months. 26 specialists. 111 appointments.

First book in the You Might Be a Zebra series

About the Book

Rare Unveiled:
A Memoir

20 months. 26 specialists.

111 appointments.

First book in the You Might Be a Zebra series

About the Book

Still being told everything looks normal?

For years, no one connected the diagnoses I was collecting. These are the guides, FAQs, and clinical research that emerged when the pattern finally became clear.

Guides & FAQs I Wrote

The Science I Relied On

NEW PODCAST

Miss Liz's Teatime 777

When Refusing to Give Up Becomes the Diagnosis.

Monica shares her four-year diagnostic journey through craniocervical instability, what it took to find answers, and why she built a patient resource from the search.

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Listen

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, Tethered Cord and hEDS.

Rare Unveiled: A Memoir

Rare Unveiled:A Memoir

Still being told everything looks normal?

Still being told everything looks normal?

Miss Liz's Teatime 777

Rare Unveiled:
A Memoir