A movement

Dedicated 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 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.

We’re 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

 
 
US Congress

05.27.19 | CALL TO ACTION! HR 2620 - THE FASTER TREATMENTS & CURES FOR EYE DISEASES ACT

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.