For award-winning filmmakers Anthony Mathile and Stacey Lee, telling the story of ependymoma patients and their families is their most rewarding work. But it’s also personal.

In 2003, Anthony’s father, Dallas, was diagnosed with an ependymoma. “There was no information on the disease and nowhere to turn. My family was really in the dark,” Anthony says.

To help prevent another family from feeling alone and uninformed in their ependymoma journey, Anthony got involved with the CERN Foundation by using his storytelling skills as a documentary videographer. Together with Stacey, now his fiancé, their projects for the foundation include producing the People of CERN video series to humanize the experience of ependymoma, filming events to raise awareness and creating informative animations to solicit action.

“Our goal is to rally the ependymoma community around a common experience: the challenge of being diagnosed with a disease people don’t know about,” Stacey says.

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An Extraordinary Destiny

By Adam

CERN Inspirational Story

Growing up, I always confused the words benign and malignant, never really needing to know which was which. Aged 32 at the time, I sat in my neurosurgeon’s office and heard the word, “malignant.” Right then, I knew exactly what he meant, I had cancer.

Months before those words were uttered, in the fall of 2013, I noticed unusual things happening to me that I just couldn’t place. About once a month in the middle of the night, I would wake up with these strange déjà vu experiences; images flashing before my eyes that appeared to be familiar to me, but I couldn’t place or identify them. I’d go back to sleep after a moment or two and wake in the morning with every joint and muscle aching. I was exhausted and would ache for the next week.

In January, 2014, sometime in the middle of the night, I awoke on the floor of my bedroom with the objects from my nightstand all around me. I picked them up and quickly got back into bed. In the morning I noticed I had a black eye and slightly bruised face. It added more mystery to what was happening, but even then I didn’t think to go to the doctor. It wasn’t until I went partially blind while I was teaching my high school students one day that I made an appointment with my doctor.

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