A Foundation

Committed to Curing Childhood Blindness

Thousands of children and adults not only lose their hearing, but also their eyesight due to Usher Syndrome Type 1B. Save Sight Now is committed to helping them save or restore their vision by raising money for medical research. They’ve already lost their hearing, we’re trying to ensure they also dont lose their vision.

We have partnered with the Foundation Fighting Blindness to complete our mission of finding a treatment. We are looking at every promising strategy that has the potential to slow, stop and 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.

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Save Sight Now Updates


Update | #FIGHTFORSIGHT Campaign | 10 Days Left

We have just over one week left in our 30 day campaign and a long way to go. Thank you to everyone that has supported us by donating and sharing our story, we are so grateful for your help. We hope you’ll please continue to help us share our story and our mission. You can follow us on our Facebook Save Sight Now page, or connect with on Twitter @savesightnow | THANK YOU for your continued support.

#FIGHTFORSIGHT Crowdfunding Campaign Kicks Off August 12th

We are kicking off our first fundraising campaign this Monday August 12th to raise money for promising medical research that can save Lia’s vision and others with Usher Syndrome Type 1B. Please help us by donating and sharing Lia’s story. Thank you.


07.30.19 |justgiving.com for save sight now

Our Dear friend Ian Lee just completed a double marathon in support of raising awareness and money for Save Sight Now. He flew to San Francisco from London to run in the SF Ultra Marathon. We’re happy to say he completed it in 11hrs! He is alive and well and already on a plane back to London. Ian managed to raise over $1,500. Thanks Ian!



HR 2620 is bipartisan bill recently reintroduced to Congress aimed at raising $1 Billion through the creation of eye bonds. Eye-bonds would fund translational research and advance treatments and cures for many diseases and conditions that lead to blindness and severe vision impairment for over 4 million Americans and 1/2 million children. This bill is a new model that has been designed to bridge the funding gap between proven research and real treatments, but we need your help convincing our congressional representatives how vital this bill is. HELP HERE


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.