Usher Syndrome Awareness Day: The Power of Sound

Saturday, September 19 is Usher Syndrome Awareness Day. 

At 5 Points, we talk a lot about the power of sound. It’s at the heart of why we exist, why we gather people together, and why we believe music can make a difference. For our founder and director, Tyler Godsey, the power of sound is also deeply personal.

Tyler’s two children were born deaf and received cochlear implants as babies. For his family, hearing sound for the first time was an incredibly meaningful moment. It was also part of what inspired Tyler to create 5 Points Music and build an organization centered around the idea that everyone should have the opportunity to experience the power of sound.

Both of Tyler’s children were diagnosed with Usher syndrome, a rare genetic condition that affects hearing, vision, and balance. Usher syndrome is the most common genetic cause of combined deafness and blindness, and it affects more than 400,000 people around the world. That diagnosis became another important part of the story behind 5 Points.

Why This Matters to 5 Points

5 Points Music was created to pursue the power of sound in all its glory. Along the way, that mission has grown to include music therapy, hearing loss advocacy, and accessibility. We work to make our events and our community more welcoming to people of all abilities, including providing wearable SUBPAC devices that allow people to physically feel the vibrations of live music.

We believe music is about more than what you hear. It is what you feel. It is what you see. It is the people you experience it with. It is the memories you make and the connections that stay with you! That belief is a big part of why Usher syndrome awareness matters to us.

What Is Usher Syndrome?

Usher syndrome is a condition that affects three major senses: hearing, vision, and balance. There are several types of Usher syndrome, and the way it affects each person can be different. For many people, hearing loss is present from birth or develops early in life, while vision loss can progress over time. There is currently no cure for Usher syndrome. But there is a growing community of people, families, advocates, doctors, researchers, and organizations working toward better treatments and, ultimately, a cure.

AWARENESS MATTERS!!

Usher Syndrome Awareness Day was established by the Usher Syndrome Coalition in 2015 and takes place on the 3rd Saturday of September each year. This year, it’s September 19. The Coalition’s 2026 campaign is centered around the idea that a diagnosis is only one part of someone’s story.

A Diagnosis 

People living with Usher syndrome are so much more than their diagnosis. They are musicians, parents, children, teachers, artists, athletes, friends, advocates, and so much more. They have families and communities supporting them, dreams they are working toward, and stories that deserve to be heard. This year’s Usher Syndrome Awareness Day campaign asks people to think about the whole person, not just the diagnosis.

The Usher Syndrome Coalition works to connect people and families living with Usher syndrome to resources, research, and one another. The Coalition also works to support research and create pathways for individuals and families to participate in the growing effort to better understand Usher syndrome and develop treatments.

This Usher Syndrome Awareness Day, we want our 5 Points family to learn a little more, share what you learn with someone else, and consider supporting the work of the Usher Syndrome Coalition.

If you would like to help, you can make a donation directly to the Usher Syndrome Coalition. Every contribution helps support the people and families living with Usher syndrome and the work being done to build a future with better treatments and a cure.

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