Usher Syndrome

Welcome to the A2A Usher Syndrome Advocacy Resource Center (ARC), an outreach project of the nonprofit Adversity 2 Advocacy Alliance, aiming to help individuals impacted by Usher syndrome step into Usher syndrome advocacy.

We hope you’ll be inspired by our A2A Advocates impacted by Usher syndrome, and we invite you to listen to our A2A Spotlight features and A2A 1-on-1 interviews sharing powerful stories of how individuals impacted by Usher syndrome are turning adversity into advocacy.

While you’re here, we hope you’ll join our Usher Syndrome Messages of Hope campaign. Give hope. Get hope. All in 30 seconds. And if you’re interested in sharing YOUR story with the help of one of our professional journalists, let us know!

Oh, and please be sure to add your name to our Wall of Allies, so you can show your support for our advocates. If you’d like, we’ll also send you our free monthly e-newsletter.

Meet our A2A Advocates

Rebecca Alexander

Rebecca Alexander

Rebecca Alexander Adversity: Usher Syndrome (visual and hearing impairment) Advocacy: Has become the “poster child” for Usher Syndrome. "I realized I was willing to be the poster child for this disease because I wanted to raise awareness about this....

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A2A Spotlight Features

Spotlight: Rebecca Alexander

Spotlight: Rebecca Alexander

A2A feature on Rebecca Alexander as heard on KCBS Radio:   A2A Founder Jeff Bell talks with Rebecca Alexander about life with Usher Syndrome Type III, losing her vision and hearing, and penning her new book, NOT FADE AWAY: A Memoir of Senses Lost and Found. To...