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
See Us, Hear Us: An Immersive Gallery Fundraiser
Past Events • October 23, 2025See Us, Hear Us: An Immersive Exhibition for Usher syndrome On Thursday, October 23rd, 2025, the Usher Syndrome Society HOSTED SEE US, HEAR US: An immersive digital experience at ARTECHOUSE NYC, bringING a decade of storytelling to life....
Conversations with USH: Brenden Sorensen
Past events • January 10, 2024Conversations with USH: Brenden Sorensen On January 10, 2024, the Usher Syndrome Society hosted our second Conversations with USH event. This special evening featured Brenden Sorensen, a talented composer and pianist living with...
USH X Topgolf 2024
Past Events • December 3, 2024USH X TOPGOLF 2024On December 3rd, 2024, The Usher Syndrome Society hosted our annual Sight, Sound, & Strength Fundraiser at Topgolf Boston-Canton. This year marked our largest fundraising event so far and we could not be more...