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
Conversations With USH: Becca Meyers
Past events • September 20, 2024Conversations with USH: Becca MeyersOn September 20th, 2024, the Usher Syndrome Society hosted Conversations with USH in honor of Usher Syndrome Awareness Day. Conversations with USH is a live interview series moderated by Rebecca...
2024 Shine a Light Portrait Sign-Ups
2024 connections conference portrait sign upIt's time to share your storyWhat is the shine a light on usher syndrome exhibit?Shine a Light on Usher Syndrome is one of the Usher Syndrome Society's primary awareness initiatives designed to share the faces and stories of...
Lobbying for USH
Lobby-ing for USH CampaignAn Awareness Initiative for Usher Syndrome in Lobbies Around BostonLobby-ing for USH is an opportunity to showcase our powerful Shine A Light on Usher Syndrome Photojournalism Exhibit in prominent building lobbies around the city of Boston...