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 Swim Alcatraz 2026
Past Events • October 17, 2026USH X Swim Alcatraz 2026On October 17th, The Usher Syndrome Society hosted an awareness event and fundraiser featuring ten swimmers living with Usher syndrome and 12 support swimmers. These 22 individuals made their way across open water...
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...
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...