How does music tell the story of genetic hearing loss?

In this episode, Kate talks to Matt Hay about is book, “Soundtrack of Silence”. Matt opens up about his experience with neurofibromatosis type 2 (NF2), a genetic condition that led to profound hearing loss- and ultimately, the creation of his memoir, “Soundtrack of Silence: Love, Loss, and a Playlist for Life”. We explore his and his wife’s journey with IVF and preimplantation genetic testing, how they faced life-changing diagnoses together, and why his wife is the true hero of his story. Matt tells us how music shaped his life and how he continues to connect with it after hearing loss, the emotional impact of NF2, and the one song that defines his life today.

Matt Hay (IU MS’99, MBA’09, DrPH’26) has a long journey toward deafness and even longer journey toward learning to “hear” again with an experimental brainstem implant. Now an global in-demand keynote speaker, 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 Soundtrack of Silence was released in 2024 by St. Martin’s Press, an imprint of Macmillan. Publishers Weekly said Hay’s “moving memoir makes magic out of facing the music” and it immediately earned a spot as an Amazon Best Seller within the Disability Category.

When Matt isn’t adding tracks to the soundtrack of his life, he passionately supports the hearing loss community as a member of the Columbia University Genetic Counseling Advisory Board and previously as a consultant to the St. Joseph Institute for the Deaf. He 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 the Boston Marathon. He didn’t win either one.

Matt currently serves the rare disease community as the US Director of Advocacy for a global biopharmaceutical company and is a doctoral candidate at the Indiana University School of Public Health with a focus on global health leadership. He lives in Westfield, Indiana, with his wife (whom he’s quick to point out is the hero of his story) and three children.

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Here are more resources related to today’s topic:

• Findageneticcounselor.org to search for a genetic counselor near you
• But Matt’s book on Bookshop.org HERE
• Info on NF2 from National Organization for Rare Disorders
• American Society for Reproductive Medicine

 

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Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health.

The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ.