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Matt Hay


Celebrating Small Wins
Irrational Persistence
Overcoming Adversity
Thriving With a Rare Disease

Author, Rare Disease Advocate

Matt Hay, MBA has a long journey toward deafness and even longer journey toward learning to “hear” again with an experimental brainstem implant. He first publicly shared his story on a National Public Radio (NPR) podcast titled Soundtrack of Silence. The intimate, funny and authentic peek at what it’s like to start a career, fall in love and build a life while battling a rare disease inspired actor Channing Tatum and Paramount Pictures to option the motion picture rights to Matt’s life story. Matt’s memoir is slated for a 2024 release by St. Martin’s Press, an imprint of Macmillan.

When Matt isn’t adding tracks to the soundtrack of his life, he passionately supports the hearing loss community as a consultant for the St. Joseph Institute for the Deaf and member of the Columbia University Genetic Counseling Advisory Board. He’s proudly served as a Congressional lobbyist for neurofibromatosis (NF) research funding, the genetic disorder that caused his hearing loss, and has raised money for NF research by doing endurance events, including an Ironman Triathlon and most recently, the Boston Marathon. Matt currently serves the rare disease community as the US Director of Advocacy for Alexion. He lives in Westfield, Indiana, with his wife (whom he’s quick to point out is the hero of his stories) and three children.

Keynote Speech: Soundtrack of Silence 

Matt was a sophomore in college when he finds out he is going to lose his hearing. He coasts through the early years of his diagnosis in denial, but as his hearing aids get bigger and bigger, Matt realizes he wants to capture the sounds that are slipping away: his girlfriend’s voice, the click of her heels, and especially, the songs of their invincible youth. Matt starts listening to music with a new appreciation — truly studying it, as he curates the soundtrack for the rest of his life. Behind each song, there is a coming-of-age story about freedom, tragedy, and falling in love. When Matt’s hearing eventually fades to nothing, the silent soundtrack in his head takes on a role he never imagines. The audience for his story of overcoming the physical, mental and emotional challenges always changes but his authentic delivery never does. He shares his message in hopes to keep someone from ever feeling as lost, helpless and alone as he did the day he woke up deaf…the day sound became only a memory.

In the news

Podcast: Soundtrack of Silence

Matt Hay shares his unique hearing loss story, his experience living with NF2, and the critical role music plays throughout his journey.