03 Apr 2025 Summit Keynote Speaker Matt Hay Says Indiana University Just Keeps Showing Up in His Life
“What’s your favorite song?” might sound like a workshop icebreaker or dating profile question. But when you ask Matt Hay that question, he takes it seriously. Hay began to lose his hearing during his college days as an undergraduate at Indiana University and it was his own form of music therapy that helped to bring it back. 
Hay and his college roommates all took IU’s popular History of Rock and Roll and The Music of the Beatles courses and so the background music at his fraternity was always classic rock and the Beatles. After he lost his hearing and didn’t see improvement with his brainstem implants, he started listening to music. He could hear the songs so clearly in his head but they sounded grumbly from his implants. He began to wonder if maybe his brain could tell his implants how it should sound. And he started with the Beatles.
“John, Paul, George, and Ringo became a Rosetta Stone for me,” Hay explained. “Some of the early songs are only nine words long but even still it took me years to begin to pick up lines. Half of all I listen to now is the Beatles. “Let It Be” is hard to beat—it’s also a bit of a personal mantra. “Help!” Well, that was my freshman year of college. And “Yesterday”—that was my junior year.”
Hay (IU MS ’99, MBA’09, DrPH’26) is the 2025 keynote speaker for the fourth annual IU Founders & Funders Network Venture Summit. Registration is now open for the event, which will take place May 15-16, 2025 in Bloomington.
Hay is a global in-demand keynote speaker and author of the book Soundtrack of Silence: Love, Loss, and a Playlist for Life. He is a Congressional lobbyist for neurofibromatosis (NF) research funding, the genetic disorder that caused his hearing loss, a member of the Columbia University Genetic Counseling Advisory Board, and previously a consultant to the St Joseph Institute for the Deaf. He currently serves as the U.S. Director of Advocacy for a global biopharmaceutical company and is a doctoral candidate at the IU School of Public Health with a focus on global health leadership.
In many ways, Hay was a typical IU student. He went to football and basketball games, joined Fiji house (the Phi Gamma Delta fraternity), and did volunteer work with Habitat for Humanity and the IU Dance Marathon. But it was at IU that he also first learned he had a rare disease and would soon lose the ability to hear.
“It seems cliche to say this, but college really shaped my outlook on things,” Hay said. “On one hand I’m learning about finance, accounting, and marketing and how our world operates from a business perspective but at the same time I learn I have a rare disease, I’m losing my hearing, and I’m getting fitted for hearing aids.”
Hay graduated in 1999 and went to work at NewsAmerica Marketing, a job he secured through the IU business school placement office. He worked for the same company for 20 years. He recalls that time as wonderful and rewarding but eventually his health could no longer allow it. At this point he had gone through 20 surgeries and was fully deaf.
“My full-time assistant would listen to my voice mails because I couldn’t hear them anymore,” he said. “It wasn’t sustainable.”
Through an IU employee who was a good friend and mentor, Todd Richardson (now IU’s COO), he heard about a company launching a medical device in hearing care. He went on to work at Redux in Indianapolis, where he was instrumental in their global launch. Two years later the startup mentality he picked up at Redux combined with his sales experience led him to his current purpose—advocacy. In 2000 the FDA approved a drug to treat types of NF, the rare disease Hay has. Two years later he was a rare disease advocate for the pharmaceutical company that had developed the drug.
“This was a rare convergence of knowing what I wanted and having an opportunity,” Hay said. “The only reason the pharma company even knew about me was because a fraternity brother had worked with them and told them about me. In fact, I’m just now realizing that every job I have had since 1995 I got through someone at IU.”
Hay has been a patient advocate for three years now, and he calls his job the best and hardest job he has ever had. A big part of his job is finding the people who are impacted—no small task for diseases that might impact one in 100,000 people—and ensuring they can meet the needs of underserved communities.
“It might be easy to reach out to those who live 5 miles from Stanford University, but I want to make sure we reach the people living in rural Alabama too,” he said.
Hay’s passion for reaching those who need it also led to him writing his memoir, Soundtrack of Silence: Love, Loss, and a Playlist for Life, which was published just over a year ago. Hay set out to write the book he needed when he was 22 years old, diagnosed with a disease he had never heard about, didn’t know anyone to ask, and felt very alone (despite being surrounded by supportive friends and family).
“At first I thought, who am I to be writing a memoir at 45—it felt very selfish,” Hay said. “But as I started putting things down on paper I realized the selfish thing would be to not write the book and not tell my story, if it could make someone else’s life easier. I wanted to get this book out and hope people can relate to it, not me, and how it might help them.”
Hay feels like the writing of the book was a really healthy process and one that gave him more appreciation for the support network he had in every phase of his life. When his dad died, while he was writing his book, his wife provided him the additional support he needed and helped make many decisions that he wasn’t able to. It was only then that he realized that he was not able to be there for her in the same way, when her own father died, because he had recently lost his hearing and was nearing one of his surgeries. Writing the book opened a door for him to apologize to her and helped him to realize the value in looking back on one’s life.
“Going back and reflecting on different parts of your life is a really healthy thing,” he said.
While this will be Hay’s first time attending the Summit, he’s known about IU Ventures for years and has provided advice and counseling in an unofficial capacity for healthcare-related and inclusion-related business ideas. That said, Hay will be the first to admit that it’s not his venture prowess or entrepreneurial experience that brings him to the IU Ventures event.
“I don’t have any life hacks or short cuts or specific tips I plan to share,” Hay said. “The closest thing I have to a venture is writing a book and becoming a public speaker who shares my journey living with a rare disease. So what I can share is my lived experience, some things I wish I had done differently, and some questions I wish someone had asked me. And I hope that what I share is helpful.”
Hay is looking forward to coming back to Bloomington for the event but he is already a regular visitor. He remains close with his fraternity brothers, faculty, and others he met when he was a student. Two of his children, twins, are both freshmen at IU this year and he and his wife enjoy coming back for visits and games. And, despite the demands of his advocacy job, Hay isn’t done with his IU education. He is currently pursuing his doctorate at Indiana University’s Richard M. Fairbanks School of Public Health in Indianapolis, where he plans to take boards in August.
“I have found myself at tables where health decisions are made for entire populations—and I don’t know how people can sit at those tables and not question whether or not they deserve to be there,” he said. “I looked back on my life and asked if I deserved to be here. I could see how I had earned the seat professionally and also personally. But I was the only one who didn’t have an MD or PhD and so there was some self doubt if I had earned the seat academically.”
While Hay didn’t set out to earn a third degree from IU, when he began researching programs he realized IU was one of only two schools that fit the criteria he wanted for his program.
“Indiana University just keeps showing up in my life,” he said.
To register for the IU Ventures Summit, which is limited to 300 people and is expected to sell out, please visit the IU Ventures website. Registration is $100 and includes all Summit programming. IU Ventures also offers a limited number of full scholarships (offered first come, first served) for current IU students to attend all Summit activities.