More Than A Diagnosis
No person wants to learn they are losing their vision, and no parent wants to face a world where their child will go blind. Yet, for thousands of patients and families across the world, this is their reality.
But, a diagnosis does not define a person. Families living with Usher Syndrome don’t need pity, they need support and opportunity. Learn more about what it’s like to live with this challenging diagnosis.
“I don't want anyone to feel sorry for me, and I do not feel sorry for myself. That would imply that my life sucks, and also pushes this idea that you have to be 'normal' to have an awesome life.”
— Ethan Morrobel, Usher Syndrome 1B
Defy The Darkness
A diagnosis of Usher Syndrome impacts the entire family. The Shepard and Feller families share their story of what it’s like for parents to receive this diagnosis for their children, and the path forward out of darkness.
Community Voices
“It's not just about what's missing—it's about how the brain, the body, and the emotions respond to that missingness. It's about how long it takes to recover from a noisy dinner. How hard it is to find something you dropped on the floor. How exhausting it is to navigate a new space when your brain has no model to work from.”
Mark Hubers
Usher Syndrome 2A
“When I watch my kids on the ice, I see our whole journey. They stumble, miss passes, fall — and then they rise. Again and again. It’s about defying expectations and daring to dream bigger than anyone imagined. With the right support and determination, they keep proving just how much is possible.”
Pamela Aasen
Mother of two children with Usher Syndrome 1B