February 28, 2026
Rare Disease Day 2026
In 2025, we featured the Mullarkey Family in our second National Every Second Counts commercial. In the making of that commercial, Rebecca Alexander sat down with Samantha and Alec Mullarkey on behalf of the Usher Syndrome Society to learn more about their young son Michael’s unexpected diagnosis with Usher syndrome. In honor of Rare Disease Day today, we are sharing their story.
More Events
2026 Shine a Light Portrait Sign ups
2026 connections conference portrait sign upJoin the Shine a Light on Usher syndrome Portrait ExhibitThe Shine a Light on Usher Syndrome Exhibit is the largest collection of photographs and stories from people around the world living with Usher syndrome, designed to...
USH X Swim Alcatraz 2026
Upcoming Events • October 17, 2026USH X Swim Alcatraz 2026This October, the Usher Syndrome Society will host a swim from Alcatraz to shore in honor of a crossing that Rebecca Alexander completed more than a decade ago. The event will include 20 swimmers in total: 10...
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...