September 24, 2018

Chris Cusano | Executive Director, Connecticut Brain Tumor Alliance

Chris Cusano

Learning the ropes in leading a nonprofit after spending years at a corporate law firm might present some challenges for Chris Cusano, the new executive director of the Connecticut Brain Tumor Alliance.

But that's nothing compared to the challenges he faced having to re-learn basic functions like reading and writing following his own surgery after he was diagnosed with a brain tumor in 2008.

Cusano, a West Hartford resident, served on the Alliance's board since 2015, and was appointed executive director last year. He said there may be some getting used to reporting to a board he previously led, but believes his relationships with board members will help smooth the transition.

What is the most challenging part of living with, and receiving surgery for a brain tumor?

I learned on July 1, 2008, that I had a tumor and was in the operating room the next day, so there was not much time to process it. The hardest part was overcoming adversity. I went from completing law school exams to reading children's books and relearning how to write, as well as rebuilding the strength I lost on my right side.

Give us an anecdote of the trials and tribulations you faced during your recovery.

At the time of my diagnosis, I was writing a song and it was halfway complete. When I returned home from my first hospital stay, I sat at my piano to play, but I had lost the ability to play and read music.

Following my third operation, a miracle had occurred — I sat at the piano to play my original composition and into the song I went. Over the next few weeks, I completed the song and subsequently titled it "Brainstorm."

Is there anything about brain tumors — and those living with them — that most people don't know, but should?

When you are diagnosed with a brain tumor, and after surgery, life will be different and the recovery will differ for every single patient. However, as a patient, you need to take control and be your own best advocate, and this includes asking questions that you believe are ill-suited or you are uncomfortable asking.

What are your top priorities for CTBTA?

I want to see the CTBTA be the driving force in making Connecticut a center of brain tumor excellence. Step one in achieving this goal will be having our most successful annual 5K walk and run — Path of Hope — to date. The event is on Sept. 29 at Jennings Beach in Fairfield.

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