Save Sight Now

Cause Area

  • Children & Youth
  • Community
  • Health & Medicine
  • International
  • People with Disabilities


15 Ross StreetSan Rafael, CA 94901 United States

Organization Information

Mission Statement

Usher syndrome type1 is a genetic disorder that robs children of their hearing and balance from birth and rapidly deteriorates their vision. Usher syndrome is the most common form of deaf blindness. Imagine navigating the world without sound, balance and vision. We’re focused on finding a treatment or cure for Retinitis Pigmentosa - the cause of blindness related to Usher syndrome. Our goal is to ensure those living with Usher syndrome type 1B - an underserved community - do not lose another critical sense for experiencing and navigating the world around them. We know this is achievable because we’ve already seen successful treatments approved by the FDA for other forms of retinal diseases; and we’ve made it our goal to ensure researchers are prioritizing treatments for those that have already lost so much by funding their efforts.


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 has partnered with the Foundation Fighting Blindness to help find and fund 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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