Finding His Voice: Joey Bean and The Neurofibromin Project

Author: NF Network, NF California, Joey Bean

Published On: 4/03/26

At 38 years old, Joey Bean has spent a lifetime navigating the challenges of Neurofibromatosis Type 1 (NF1). Born and raised in Southern California, Joey grew up with tumors on his body—many hidden beneath clothing, but never far from his mind. Like many in the NF community, he learned early on how to manage not just the physical effects of NF1, but also the social challenges that can come with it—like unwanted questions or stares.

Still, Joey refused to let NF1 define the limits of his life. He went on to fulfill a dream that many share: working at Disneyland Park. For 13 years, he was part of the magic, creating joy for others while building a meaningful career of his own.

As time went on, however, Joey’s NF1 progressed. More visible tumors and increasing medical complications made it difficult to continue in a traditional work environment. But rather than stepping back, Joey chose to move forward—into a new and powerful chapter.

He returned to school to study radio broadcasting and podcasting, channeling his lived experience into something impactful. The result is The Neurofibromin Project, a short-form podcast with a mission to inform, educate, and raise awareness about NF1. The name itself is deeply intentional: neurofibromin is the protein affected by NF1, and when it doesn’t function properly, it disrupts communication within the body. Joey’s podcast flips that narrative—creating clearer communication, greater understanding, and a stronger voice for the NF community.

Designed in a radio-friendly format, The Neurofibromin Project reached listeners through KLBC Radio, a college-based internet station that streams worldwide. Alongside the podcast, Joey has also produced a series of public service announcements about NF1, further amplifying awareness and education.

Joey’s journey is a powerful reminder that even when life takes an unexpected turn, it can still lead to something meaningful. Through his podcast, he’s not only sharing his story—he’s helping others feel seen, heard, and understood.

Find upcoming NF Events            Donate to NF          Stay iNFormed