Conversations With USH

Conversations with USH is an interview series with Rebecca Alexander that highlights the lived experiences of individuals from around the world navigating life with Usher syndrome.

This series consists of both live events and Sense Stories (virtual interviews) showcasing both the challenges faced and the remarkable ways in which people with USH lead full, vibrant lives.



Each conversation invites you into an intimate dialogue where guests share their stories, triumphs, and the unique ways they adapt and thrive. Conversations with USH aims to foster a greater understanding of Usher syndrome, dispel misconceptions, and build a community of support, strength, and empowerment.

Through these heartfelt exchanges, Rebecca and her guests illuminate the resilience and boundless potential of those living with USH.


Live Interviews

Sense Stories is our way to help educate the world about Usher syndrome through video storytelling of everyday life with Usher syndrome. The current challenges in the world leave everyone feeling isolated, but the effect on those living with Usher syndrome is even more pronounced. It is in these times that it feels most important to reach out to our Usher syndrome community and tell the stories of those living with this rare disease.