of us are living in the US with

Usher Syndrome.

Usher Syndrome:

/ˈəSHər ˈsinˌdrōm/ noun.

A genetic condition that causes deafness and blindness. It is the leading cause of deaf-blindness.

While many of us have been given the gift of hearing thanks to hearing aids and cochlear implants, none of us have effective treatments for blindness.
We want to gain independence by being able to drive to many destinations on our own, but we can't because of our vision loss.

Many of us struggle to see at night and can't see the stars to appreciate the big universe we have out there.

The world has so many magnificient scenes to offer us - waterfalls, beaches, sunsets, mountains, rainbows, etc. We fear that we won't be able to continue to see our beautiful planet if we don't receive treatments for our eyesight.

Usher Syndrome is woefully underfunded.

NIH Funding Diagram

We receive

only $3 million

from you.

We would appreciate greater support so that we can live independent and fulfilling lives by being able to get behind the wheel and take many journeys to see our incredible world.

Click here to listen to our stories.

Thank You

I have Usher Syndrome or a family member or friend with Usher Syndrome. What can I do?

Write a letter to the members of the Senate Appropriations Committee responsible for determining NIH funding.

©2012 - Designed by Rachel Chaikof, a young adult with Usher Syndrome.