|The Foundation Fighting Blindness is the world’s largest non-governmental source of research funding for Usher syndrome. Since 1971, the Foundation has raised more than $350 million toward its mission of finding preventions, treatments, and cures for the entire spectrum of retinal degenerative diseases, including Usher syndrome.|
Usher syndrome is the leading cause of combined deafness and blindness, affecting approximately 45,000 Americans.
FFB-funded research at the University of California, Berkeley helped characterize the Usher 3 gene that causes Rebecca Alexander’s vision and hearing loss.
Currently, the Foundation is funding a variety of research projects and treatment approaches to help people affected by all forms of Usher syndrome. These research efforts include:
For more information on Usher syndrome and related research, visit FFB’s Usher syndrome information page.
- Phase II/III human studies of a tiny implantable capsule that shows great promise for slowing, and possibly reversing, vision loss in people affected by Usher syndrome and a variety of other retinal degenerative diseases. This treatment is being developed by the biotechnology company Neurotech with funding from the Foundation Fighting Blindness.
- Multiple studies of gene therapy for correcting genetic variations that cause Usher syndrome. These studies are being conducted by a variety of Foundation-funded institutions including the University of Pennsylvania, University of Florida-Gainsville, and UCLA.
- Genetic screening programs for identifying young children who may be affected by Usher syndrome. These studies are being conducted by Foundation-funded research centers including Boys Town National Research Hospital in Omaha and the Oregon Health and Sciences University in Portland.
- Multiple studies of neuroprotective agents — drugs and biological molecules — that show promise for slowing or halting vision loss from Usher syndrome. Numerous Foundation-funded studies of this therapy approach are underway including investigations at University of Oklahoma and UCSF.
- Genetic research to identify the genes that are linked to various forms of Usher syndrome. Foundation-funded genetic studies for Usher syndrome are taking place at the University of Iowa and other leading genetic research centers.
You can help advance research to eradicate Usher syndrome by making a donation to FFB.