The Advocate Whose Soundtrack of Silence Speaks Volumes w/ Matt Hay

When Matt Hay interviewed for his job in industry, he casually mentioned he might need time off because Channing Tatum was set to play him in a movie. “You know, the Magic Mike guy.” Mostly a joke - though Tatum has indeed optioned the rights. It was classic Matt: understated, deadpan humor that somehow makes the impossible feel entirely possible.

This is exactly how Matt changes lives in the rare disease community.

Matt lives with Neurofibromatosis Type 2 (NF2), a rare genetic disorder affecting 1 in 40,000 people. He lost his hearing entirely in 2004 and has navigated nerve damage, intricate surgeries, and daily adjustments ever since. But Matt's resilience is anchored by relentless optimism, dark humor, and a commitment to living fully, even in silence.

Yet, it took nearly 20 years for Matt to openly share his journey. "It wasn’t because I was shy," he says. "It felt selfish. Like my experience didn’t deserve more airtime than others." The turning point arrived while listening to patients at work who desperately needed stories like theirs reflected back. He realized then the true selfish act would be to master the complexities of living with NF2 and keep it to himself.

This revelation sparked Matt’s powerful memoir, The Soundtrack of Silence. He transformed his memories into a poignant Spotify playlist, bringing forgotten sounds back to vivid life through music. Songs became the emotional anchors preserving his identity. There is the 'Talking Heads’ "Once in a Lifetime," a song reminding us how strange and beautiful it is to find yourself exactly where you never expected. Fitting.

Matt is not only sharing his experience but he’s amplifying the collective voice of patients. He mentors young people facing NF2, advocates passionately for patient-centered research and policy, and insists patients must be the primary input in every decision affecting them. Currently pursuing a Doctorate in Public Health, Matt strives to bridge patient experiences with clinical realities, proving advocacy doesn’t always require a nonprofit title. It demands persistent daily action.

What truly sets Matt apart is how authentically he integrates vulnerability, humor, and profound honesty. He vividly describes hearing loss as not a linear decline but a relentless rollercoaster of adjustment: “You crest the hill with each new technology, then plunge downward faster each time.” It’s a ride he navigates courageously, celebrating small yet significant victories - like captioning systems, improved accessibility, or a quiet moment clearly understood.

Matt describes everyday interactions as tactical missions. Like Jason Bourne entering a crowded room, he assesses exits, lighting, and faces. Will someone have a beard, complicating lip-reading? Should he risk losing conversational threads to pick up a dropped fork? These calculated scenarios are a stark reminder of the unseen efforts rare disease patients make to simply participate.

Despite these challenges, Matt refuses to retreat into silence. He reminds us of the vivid moment he stepped outside after receiving powerful new hearing aids, astonished by the forgotten sounds around him. There was the rustling leaves, distant birds, even the surprising whoosh of his jeans brushing together. These experiences, though fleeting, fuel his persistent advocacy.

Matt’s message resonates far beyond NF2. “One in ten people will find themselves in the rare disease community. It’s not if - it’s when.” This universality underscores Matt’s larger message: investing in rare disease research benefits everyone!

I asked a friend and former co worker of Matt's her thoughts and she explained his impact perfectly. "I went to the Children's Tumor Foundation meeting with Matt and observed his endless compassion and availability to listen and share space for people to connect. He's a role model for the youngest people in the community and their parents. Truly a beacon of what's possible in the future."

I first met Matt years ago after giving a storytelling presentation to a patient group at a pharma company. I was still not confident in calling myself a 'storyteller' yet. Later that day Matt found me in the restaurant of the hotel and told me he was in the audience earlier and that he really enjoyed it. He was encouraging, he expressed genuine appreciation for the power of storytelling adn i loved him immediately. We instantly connected on this love of ours. That brief interaction was profoundly reassuring, especially after I took home his book and devoured it. Matt has deep empathy and a easy breezy ability to uplift others. Even in fleeting moments.

Matt Hay isn’t here to perform pain or seek sympathy. He’s here to create change in the lives of rare disease patients, one clear-eyed truth, small victory, and heartfelt story at a time. Through his advocacy, Matt teaches us that living with a rare disease isn’t about surviving quietly and that it's about boldly rewriting your life's soundtrack, no matter the silence. Do yourself a favor and buy his book. I didn't spoil a thing I promise. There are plenty of adventures around each song he chose. Then, on a sunny day, turn on his play list, roll down the windows - and drive.

-By Effie Parks, CTNNB1 mom & storyteller at Once Upon a Gene. Bearing witness. Following starlight. Carrying the fuel.

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