News • June 26, 2025
2025 USH Advocacy on the Hill: Advocating for a Cure for Usher Syndrome
Peggy Borst, Director of Research Advocacy at the Usher Syndrome Society, collaborated closely with Krista Vasi, Executive Director of the Usher Syndrome Coalition, and Greg Laughlin, former Texas Congressman (now with Pillsbury Winthrop Shaw Pittman LLP, representing the Coalition pro bono), to sustain momentum in the push for $50 million in FY26 vision loss research funding. Together, they led a group of empowered advocates in meetings with more than 35 Members of Congress. In the coming months, additional meetings will be held with key members to stress the urgency of maintaining the NIH/ National Eye Institute, the importance of continuing to fund ongoing research, and the critical need for additional funds for new trials. Stay tuned for more updates!
Related News
Grand Rapids Golf For a Cure Outing
News • July 1, 2025Grand Rapids Golf For a Cure FundraiserOn June 7th, Nicole and Cody Schut hosted their annual Grand Rapids Golf Outing in honor of their daughter Braelyn Schut, who lives with Usher syndrome Type 2A. The event was a tremendous success, raising over...
Shine a Light Photography at the 2025 International Research Symposium
News • June 26, 2025Shine a Light on Usher Syndrome Photography in the NetherlandsIn June 2025, the Usher Syndrome Society attended the USH2025 International Research Symposium in Nijmegen, the Netherlands. The conference was hosted by the Netherlands-based...
Rebecca Alexander talks about the Every Second Counts Campaign on The Today Show
News • May 16, 2024Rebecca Alexander Talks about the Every Second Counts Campaign on The Today Show and NBC News NowOn May 16th, 2024 following The Usher Syndrome Society's Times Square takeover that happened on May 1st, Rebecca Alexander and the Usher Syndrome...