Upcoming events • April 16, 2026
Cocktails and Conversations with USH
in Chicago
On April 16th, 2026, you are invited to join the Usher Syndrome Society at the Blue Door Farm Stand for Cocktails and Conversations with USH in Chicago. Experience a powerful dialogue led by acclaimed author, psychotherapist, and Usher Syndrome Society Board Director Rebecca Alexander, whose extraordinary ability to guide honest, compassionate conversation creates space for insight, humor, and hope. She will be joined by Jon Schultz, who, like Rebecca, is an Usher Syndrome Society Board Director also living with Usher syndrome, a rare genetic condition that causes progressive deafness and blindness. Together, their stories illuminate what it means to navigate a world of changing sight and sound with resilience and purpose.
Throughout the evening, guests will also have the opportunity to wear tunnel-vision blindfolds and earplugs while mingling, enjoying cocktails, and sharing appetizers, offering a brief but powerful glimpse into the sensory realities of living with Usher syndrome.
Jon Schultz with his wife, Lizzie, and their two children.
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 will go directly to research for Usher syndrome.
EVENT DETAILS
WHEN:
Thursday, April 16th, 2026
5:30PM – 8PM
WHERE:
Blue Door Farm Stand
2010 N Halsted St 2nd Floor
Chicago, IL
60614
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.
More Events
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...
Times Square Takeover for Usher Syndrome Awareness Day
Past events • September 20, 2025Times Square Takeover for Usher Syndrome Awareness Day 2025On September 20th, 2025 at 11AM, The Usher Syndrome Society took over multiple Times Square billboards in the heart of NYC for a second time! This year's takeover took...
See Us, Hear Us: An Immersive Gallery Fundraiser
Past Events • October 23, 2025See Us, Hear Us: An Immersive Exhibition for Usher syndrome On Thursday, October 23rd, 2025, the Usher Syndrome Society HOSTED SEE US, HEAR US: An immersive digital experience at ARTECHOUSE NYC, bringING a decade of storytelling to life....