Tomorrow, We Come Together: The 1st Annual Beyond Usher Syndrome Family Fundraiser

Tomorrow, September 20, from 3:00–5:00 PM, families and friends are invited to join us for the 1st Annual Beyond Usher Syndrome Family Fundraiser—an afternoon dedicated to awareness, research, hope, and, most importantly, community.

Our event is an open-play event for all families, with games, vendors, food trucks, a silent auction, family activities, and plenty of opportunities to connect. Admission is $5 per person, and a waiver is required.

But this event is about more than an afternoon of fun. It is about creating hope for families living with Usher syndrome and helping move research forward.

What Is Usher Syndrome?

Usher syndrome is a rare inherited genetic condition that affects both hearing and vision. It can also affect balance in some people. The condition is associated with hearing loss or deafness and an eye disease called retinitis pigmentosa (RP), which causes progressive degeneration of the retina.

There are three major types of Usher syndrome, and the experience can vary significantly from one person to another.

For some children, hearing loss or deafness is present from birth. Vision loss may begin later with difficulty seeing in dim light or losing peripheral vision. Over time, vision can become increasingly limited. In other forms, hearing loss and vision changes develop later in childhood or adolescence.

That combination can profoundly affect communication, mobility, education, independence, and everyday life.

And right now, there is no cure for Usher syndrome. Current care focuses on managing hearing, vision, and balance challenges through options such as hearing aids, cochlear implants, low-vision services, rehabilitation, and other supportive interventions.

Why Research Matters So Much

Research is where hope becomes possibility.

Scientists are working to better understand the genes responsible for Usher syndrome, develop earlier methods of diagnosis, understand how the disease progresses, and create treatments that could potentially slow or prevent vision loss.

And there is meaningful progress to celebrate.

As of September 2026, researchers are investigating multiple potential treatments, including gene therapies and RNA-based approaches targeting specific genetic causes of Usher syndrome. Clinical research is also examining treatments designed to protect retinal cells and slow vision loss.

These advances don't happen overnight. They require years of laboratory research, clinical studies, patient participation, and—critically—funding.

Every dollar raised through our fundraiser can help support the broader effort to understand Usher syndrome and pursue better treatments and, ultimately, a cure.

Come Play. Come Connect. Come Give Hope.

Tomorrow is a chance for our community to come together—not simply to talk about Usher syndrome, but to do something about it.

Bring your family. Bring your friends. Come play, eat, shop, participate in the silent auction, and meet other families who understand why this mission matters.

📅 September 20 at Fortified Fitness with GymCore (203 Southpointe Court, Murfreesboro, TN 37130)

🕒 3:00–5:00 PM

🎟️ $5 per person

📝 Waiver required

💙 Open play for all families

Purchase Tickets Ahead of Time HERE!

Games • Vendors • Food Trucks • Silent Auction • Family Fun & More

Most importantly, all proceeds support research for Usher syndrome.

Because behind every research study is a family waiting for answers. Behind every breakthrough is a person hoping to preserve their sight, their hearing, their independence, and their future.

Join us. Play. Give hope. Change lives.

Together, we can go Beyond Usher Syndrome. 💙

*Medical information in this post is based on information from the National Eye Institute and National Institute on Deafness and Other Communication Disorders. Research developments are ongoing, and investigational treatments are not yet established cures.