Past Events • April 16, 2026
Cocktails and Conversations with USH in Chicago
On 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 honest dialogue between acclaimed author and psychotherapist Rebecca Alexander and Jon Schultz. Both Rebecca and Jon are living with Usher syndrome type 3, a rare genetic condition that causes progressive deafness and blindness. Together, they shared stories that helped to illuminate what it means to navigate a world of changing sight and sound with resilience and purpose.
Throughout the evening, guests were given the opportunity to wear tunnel-vision blindfolds and earplugs to get a sense of what it feels like to live with Usher syndrome.
This intimate gathering is part of the Usher Syndrome Society’s efforts to expand understanding, challenge misconceptions, and bring together a community rooted in strength, connection, and possibility.
All proceeds from this event go directly to research for Usher syndrome.
WATCH FULL CONVERSATION
See Event Photos Below
About Rebecca Alexander
Rebecca Alexander is an award-winning author, psychotherapist, mental health educator, keynote speaker, disability rights advocate, extreme athlete, and Board Director at the Usher Syndrome Society. Rebecca is almost completely blind and deaf due to Usher syndrome.
A dynamic speaker known for her raw honesty and lived insight, Rebecca holds dual Master’s degrees from Columbia University and leads a thriving psychotherapy practice in Manhattan. Rebecca received the Anthem Award for Social Impact and is featured in the Usher Syndrome Society’s Every Second Counts campaign across major media platforms. Rebecca is known for her ability to empower others to live more fully in the present and find meaning amid life’s challenges.
About Jon Schultz
Originally from Detroit, Jonathon attended the University of Michigan before moving to Chicago to earn his MBA and begin his career. As the Director of Strategic Initiatives for the Usher Syndrome Society’s Board, he draws on over 15 years of experience in technology startups to drive engagement with partners through connection and understanding.
Diagnosed with Usher Syndrome 3A in his early twenties, Jonathon brings a unique perspective on adaptability and resilience to his professional and family life. He is dedicated to finding a healthy balance between supporting research for a cure and deeply appreciating the day-to-day. Jonathon lives in Chicago with his wife, Lizzie, their two children, and their two dogs, and is also a certified yoga instructor.
About Jon Schultz
Originally from Detroit, Jonathon attended the University of Michigan before moving to Chicago to earn his MBA and begin his career. As the Director of Strategic Initiatives for the Usher Syndrome Society’s Board, he draws on over 15 years of experience in technology startups to drive engagement with partners through connection and understanding.
Diagnosed with Usher Syndrome 3A in his early twenties, Jonathon brings a unique perspective on adaptability and resilience to his professional and family life. He is dedicated to finding a healthy balance between supporting research for a cure and deeply appreciating the day-to-day. Jonathon lives in Chicago with his wife, Lizzie, their two children, and their two dogs, and is also a certified yoga instructor.
Thank you to our Breakthrough Sponsor!
Thank you to our Story & Science Sponsor!
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