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
USH X SPIN 2023
Past Events • November 28, 2023USH X SPIN 2023Our USH X Spin Boston Ping Pong fundraiser was an enormous success. The incredible support we received from everyone was overwhelming. Thanks to you, we were able to raise over $140,000 which will go directly to our...
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...