LOBBYING FOR USH

An Awareness Campaign for Usher Syndrome in Lobbies Around Boston

Located in this lobby, you will see the Usher Syndrome Society's Shine A Light on Usher Syndrome Photojournalism Exhibit. The exhibit is comprised of portraits and corresponding stories of the people around the world who are living with the rare disease, Usher syndrome

What is Usher Syndrome?

Usher syndrome is the leading genetic cause of combined progressive deafness and blindness. It is a rare disease that is estimated to affect 400,000 people worldwide, yet only 1% (4,000) have been identified. This means that there are likely many more people living with Usher syndrome, who have not yet been diagnosed.

There are currently no treatments and no cure for Usher syndrome.

What is the Usher Syndrome Society?

The Usher Syndrome Society is a non-profit that uses storytelling through the arts, educational events, and collaboration to raise public awareness and funds for research to find treatments and a cure for Usher syndrome (USH). The USH Society gives a face and a voice to those living with USH, making this invisible disease visible.

In addition to awareness campaigns like "Lobbying for USH", the Usher Syndrome Society is committed to funding critical Usher syndrome research and currently funds 3 separate research grants.

You can help!

100% of any donation that you make to the Usher Syndrome Society will go towards critical research efforts to find treatments and a cure for Usher syndrome. 

Your donation is secure and tax exempt. The Usher Syndrome Society is a registered 501(c)(3) Tax ID#: 26-1577154
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