AN ORGANIZATION

Committed to Curing Childhood Blindness

Thousands of children and young adults have not only lost their hearing and vestibular system due to Usher Syndrome Type 1B, but are also progressively losing their eyesight because of rapid retina degeneration due to Retinitis Pigmentosa (RP).

Save Sight Now is finding and funding treatments for promising medical research that can save their vision. We have identified leading research teams working on therapeutic strategies that have the potential to slow, stop or reverse retina degeneration related to Usher Syndrome, but we need your help. Rare diseases like Usher Syndrome are underserved and poorly funded which is why the burden of funding research falls on the shoulders of patient lead organizations like Save Sight Now. Please share our story and donate if possible.

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Funding research

Announcing Our 2024/2025 Research Award Recipients!

We are thrilled to announce the recipients of our 2024 Usher Syndrome Research Grant Award. Funding exceptional research teams that bring us closer to finding a treatment to stop vision loss caused by Usher syndrome type 1B is at the core of our mission. This year, thanks to your support, we were able to fund not one, but two new research projects, making it a total of six USH1B projects Save Sight Now is currently funding through our collaboration with the Foundation Fighting Blindness. READ MORE >>

2023 ush1b natural history

UNIRARE Now Enrolling USH1B Patients!

UniRare is an international natural history study that is currently enrolling for USH1B. Patient enrollments have already started at several clinics across the country, and more clinics will begin enrolling throughout the year. To learn more and find local clinics enrolling near you, visit the NIH clinicaltrials.gov website

We strongly encourage everyone impacted by Usher syndrome type 1B, who wants to find a treatment, enroll and participate in this study. Without the support and involvement from our rare community, whom these treatments are intended for, it will be impossible to discover and fund treatments for USH1B. If you have any questions, please go to clinicaltrials.gov to learn more and find your nearest participating clinic, or speak with your retinal specialist.

Image of a 2 page information packet about the UniRare Natural History Study for USH1B. The first page has several interlocking hands with the copy Universal Rare Gene Study overlaid on top. Clicking this image links to a PDF containing information

Our Story

Our Diagnosis, Our Fight

Our Daughter Lia was born in March, 2018. Like all new parents it was the happiest day of our lives. When she was 12 hours old, Lia failed her newborn hearing screening, 2 weeks later we learned she had profound hearing loss - she was deaf. We were crushed, scared, confused and didn’t know what the future held. When we found out Lia was a candidate for Cochlear Implants it gave us renewed hope, we had the option to give her the gift of sound, allowing her to communicate with the hearing world. We were coming to terms with the diagnosis and preparing for the work ahead.

On Friday, August 3rd 2018 we received Lia’s genetic test results… [READ MORE]