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
Orangetheory Fitness X USH
Past Events • June 3, 2023Orangetheory Fitness X USHOn June 3, 2023, Orangetheory Fitness studios around the country came together to educate the public and raise research funds for the rare disease Usher syndrome, the leading genetic cause of combined deafness and...
This is USH: An Evening of Conversation
Past Events • December 12, 2022This is USH: An Evening of ConversationOn 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...
Sight, Sound, Strength PKL
Past Events • November 30, 2022Sight, Sound, Strength PKLOn November 30, 2022 the Usher Syndrome Society hosted our annual experiential Sight, Sound, and Strength fundraiser at PKL in Boston. PKL is one of Boston's hottest new venues, with 4 premium indoor...