The Power of Storytelling 2021

The Usher Syndrome Society’s mission is to bring awareness and funds to the rare disease, Usher syndrome, through the power of storytelling. We realize that the human experience is as important as the research, so we strive as an organization to bring attention to both!

Our mission began with “Shine A Light On Usher Syndrome,” a portrait gallery that has grown to become the largest collection of portraits of those living with USH. Now, through film, we continue to shed light on the importance of the human experience with this rare disease.

Rebecca Alexander is a warrior of strength and courage. She refuses to lose her drive and zest for life, rising above every challenge she faces.

We are proud to share her impactful story. 

A Luminary Story: Rebecca Alexander

"Living with Usher syndrome is hard and it’s emotional. It has allowed me to feel so incredibly alive. My biggest hope now is that the impact of what I do with my life will encourage other people who face similar challenges or even different challenges to confront their fears. So many of us live in fear and we need to learn how to live with our fears." Rebecca Alexander



With your help, we can continue storytelling to raise awareness and funds towards treatments and a cure for Usher syndrome. We are pleased to announce that this year the Usher Syndrome Society will be giving grants to several researchers totaling over $500,000. Your donations make this possible. Please consider supporting our 2021 campaign by making a donation below.

Rebecca recently received the Future Vision Foundation's 2021 Luminary Award for her advocacy work. She was given the award alongside the Usher Syndrome Society for our extraordinary commitment to raising awareness of Usher syndrome.


Click here to view photos from the FVF Award Ceremony.