We are heartbroken to learn of the passing of NF2 warrior, author, and storyteller Ethan Brown. Ethan was an extraordinarily gifted and authentic chronicler of the triumphs and challenges of living with NF, who through his own experience and example invited people to better understand what people living with NF face. On his social media channels and in his book, The Fight of My Life: Persevering Through Neurofibromatosis, Ethan offered candid depictions, sprinkled with his characteristic humor and good will, about the progression of the disease he faced – which though it took away his hearing and physical strength and impacted his vision and ability to speak, never affected his inner strength, his courageous determination, nor his moral fortitude in living each day as it came with optimism, joy, and confidence in his mission to help end NF.
Along the way, he famously befriended the All-Star professional baseball player Ian Desmond, who despite never having heard of NF2 until he met Ethan, came to the NF cause inspired to make it better known with both public and personal outreach. As they became fast friends, we learned of their at-times humorous exchanges in a public way, as posts of their get-togethers were shared – at the ballpark, or while hunting, and even the End NF artwork they co-designed and then each had tattooed on themselves. They shared poignant moments with the public, like Ethan using a walker with Ian’s encouragement, which provided a powerful glimpse into the life of this NF hero.
As brothers and best friends, Ian became the amplification of Ethan’s voice, taking Ethan’s message to ballparks across the nation, meeting with NF families in special get-togethers, and offering hope to NF patients so they know that they are not alone. Ian has shared Ethan’s story with the media at both a national and local level, and on Ethan’s behalf accepted the CTF Champion Award in 2019, and serves as a co-chair of the Foundation’s NF2 Accelerator.
While NF2 threw a curveball at Ethan Brown, he boldly embraced the challenge with grace, thoughtfulness, realism, creativity, and even a sense of humor about the serious situation he faced. NF patients face personal challenges that can be difficult to understand, but Ethan sought to make NF visible to all, and his legacy is the attention he brought to NF through personal example, and the inspiration he offered to others to do the same.
Ethan dedicated his book to his family, and to “all the NF fighters out there. I was placed here for a reason.”
Continuing Ethan’s words: “This book is another part of my activism. It was hard to revisit these memories and put them into words while enduring my ongoing health battles, but it was important for me to build awareness of this disease and continue the fight for a cure. If we don’t have a voice, how can we be heard?”
Thank you, Ethan Brown, for being that voice. Our hearts go out to Ethan’s family and all his friends.
To learn more about Ethan Brown’s book, click here.
To watch the tribute video to Ian Desmond and Ethan Brown, click here.
