Stay in touch

Stay connected to the progress you’re helping to make possible. Subscribe to our mailing list for occasional updates on new research, funded projects, and ways to get involved.

Follow Us on Social

Minimalist wooden desk with a closed laptop, a notebook with pen, a small bowl, stacked books, and a glass vase with a purple flower, illuminated by a white desk lamp.
Minimalist workspace with a closed laptop, blue notebook, pen, glass of water, and vases with dried flowers and a pitcher, illuminated by natural light casting shadows.
Person sitting at a white table, using a laptop with one hand on the keyboard and holding a pencil over an open notebook, with a glass of water nearby.
Instagram
Living with Usher syndrome is challenging — but people with Usher Syndrome rise to that challenge every day. Access to the right tools and treatments matters. From communication support and mental health resources to the latest medicine and te
The vestibular system helps control balance and spatial orientation. In Usher Syndrome Type 1, vestibular dysfunction is common. This can affect: • Walking milestones • Athletic coordination • Balance in low light With therapy and sup
Usher Syndrome Type 1B (USH1B) is caused by mutations in the MYO7A gene. It is characterized by: • Congenital sensorineural hearing loss • Vestibular dysfunction • Early-onset Retinitis Pigmentosa USH1B is rare — and scientific
Over 1 million people are living with Retinitis Pigmentosa (RP) worldwide. RP starts with night blindness and causes a tunneling of vision over time. Treatments are on the way, but not fast enough. #UsherSyndrome #RareDisease #DeafblindCommunity