Save Sight Now

A movement

Dedicated to Curing Childhood Blindness

Thousands of children not only lose their hearing, but also lose their eyesight due to Usher Syndrome Type 1B. Save Sight Now is committed to helping our most vulnerable Usher Syndrome patients - our kids. They’ve already lost their hearing, we’re trying to ensure they also dont lose their vision.

With the approval of Luxturna - the first FDA approved retinal gene therapy for a genetic disease - and trials currently under way for USH2A, inherited retinal disease treatments are being discovered, tested, proven and manufactured today. We want to make certain Usher1 treatments aren’t far behind.

We’re looking at every promising strategy that has the potential to slow, stop or reverse Usher related RP symptoms - this can be gene specific or not. We’re finding and identifying leading research team(s) and ensuring their research gets to clinical trials, but we need your help to make this a reality.


Save Sight Now Updates

Credit: Livia Carvalho

Credit: Livia Carvalho

03.03.19 | Surveying the Usher 1b Landscape

For the last 6 months we have been reaching out to leading researchers and scientists within the IRD (Inherited Retinal Disease) space in order to get a better understanding of existing MYO7A hurdles and emerging therapeutic stratagies that can benefit Usher 1B patients. We’ve spoken with the Foundation Fighting Blindness, European and local biotech companies as well as many US academic institutions and research labs. We’ve learned a ton and are currently finalizing a path and a plan forward. We have also been connecting with other Usher 1b families and organizations to join forces in order to strengthen this movement. To learn more or join this fight, please contact us.