Past Events • December 12, 2022
This is USH: An Evening of Conversation
On December 12th, 2022, The Usher Syndrome Society hosted the first This is USH event, where we heard from Steven McCoy and Rebecca Alexander about the unique experience of living with Usher syndrome. Steven McCoy is the first recognized black deafblind journalist in the US and Rebecca Alexander is an award-winning author and psychotherapist.
The conversation was moderated by esteemed media personality, Danita Chantel, who guided Steven and Rebecca throughout a range of conversation topics, including: How to cultivate a deeply meaningful life in the face of adversity, using vulnerability as a tool for empowerment, finding comfort with discomfort, grief and loss, intersectionality, and self-advocacy.
The Usher Syndrome Society looks forward to hosting more of these intimate dialogues and sharing the complex realities of life with Usher syndrome.
More Events
USH X Swim Alcatraz 2026
Past Events • October 17, 2026USH X Swim Alcatraz 2026On October 17th, The Usher Syndrome Society hosted an awareness event and fundraiser featuring ten swimmers living with Usher syndrome and 12 support swimmers. These 22 individuals made their way across open water...
Cocktails and Conversations with USH in Chicago
Past Events • April 16, 2026Cocktails and Conversations with USH in ChicagoOn April 16th, 2026, the Usher Syndrome Society hosted Cocktails and Conversations with USH in Chicago at the Blue Door Farm Stand. This sold out event featured an authentic, humorous, and...
USH x Urban Wild 2025
Past events • December 2, 2025USH X Urban Wild 2025The Usher Syndrome Society’s annual fundraising event is dedicated to raising vital funds for Usher syndrome (USH) research, while simultaneously educating the public about living with this rare disease. The evening...



