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
Phoenix Energy Belfast City Marathon 2027
Upcoming events • May 02, 2027Phoenix Energy Belfast City Marathon & Relay ApplicationApply for a Charity Place on behalf of the Usher Syndrome Society for the Belfast City Marathon in Belfast, Ireland happening on Sunday, May 2nd, 2027! Details about the phoenix...
USH X Urban Wild 2026
Upcoming events • Tuesday, December 1, 2026USH X Urban Wild 2026You are invited to a very special evening at urban wild, filled with live music, delicious food & drink, bowling, and most importantly, raising critical funds for usher syndrome research.Please join...
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...