Save Sight Now Hosts Second USH1B Research Workshop at ARVO 2026
Refining our strategic research funding roadmap
The past several months have been incredibly productive for Save Sight Now as we continue refining our long-term research and funding roadmap while also actively funding the critical research tools, testing platforms, and foundational work needed to help accelerate treatments for children and adults losing their vision to Usher syndrome type 1B.
This year, we attended ARVO again — one of the world’s leading inherited retinal disease conferences. We joined the Foundation Fighting Blindness Innovation Summit, heard the latest updates and learned about new technologies. Save Sight Now also hosted and facilitated our second USH1B workshop, bringing together our scientific advisors, leading researchers, clinicians, and collaborators to help guide our research and funding strategy moving forward.
These workshops are essential to accelerating translational research and ensuring donor funding has the greatest possible impact. Rather than relying on a single path forward or funding projects in isolation, Save Sight Now is pursuing multiple therapeutic strategies in parallel while also funding the foundational research and tools needed to help evaluate and accelerate potential therapies. We also partnered with Odylia and their nonprofit scientific advisory team and have been collaborating with the USH1F Collaborative to explore potential gene-agnostic therapies.
Projects we are currently prioritizing
Multiple gene editing approaches
Whole-gene delivery using emerging technologies
Small molecule drug repurposing and testing
Creation of patient cell and animal models for testing therapies
While we cannot fund every potential therapeutic path to completion, we intentionally advance multiple strategies in parallel to better understand which approaches have the greatest likelihood of success — allowing us to prioritize the most promising paths forward and avoid spending valuable time and resources on those less likely to succeed.
This year also marked the first time four USH1B parent-led organizations — The Fairfield Fund, Save Sight Now Europe, Silent Sight Foundation, and Save Sight Now — came together to discuss how we can better align on strategy and focus our collective resources to accelerate progress collaboratively.
The Fairfield Fund — led by another USH1B family and an important partner in this work — also hosted a fundraiser in Denver during ARVO and raised $60,000 to help fund USH1B research and accelerate progress! Thank you, Tory and John.
We left Denver encouraged by the emerging science and its potential for USH1B therapies, but clear-eyed about the work still ahead and the time, testing, and resources required to move treatments from promising to real.
Your support is what allows us to convene the world’s leading researchers, fund the science, and continue pushing urgently toward treatments while there is still time.
Help us keep this momentum moving forward.
Every donation helps fund the research, tools, and infrastructure needed to accelerate treatments for children and adults losing their vision to Usher syndrome.