VisionBound Foundation
Transforming Lives Through Bold Generosity
On a mission to save vision in patients with Usher Syndrome
Please visit our website to learn more about our research focus
For large donations or DAF donations please email: info@visionboundfoundation.org
For donations via check please make your check out to Rare Village and include VisionBound Foundation in the memo line Checks can be mailed to:
Rare Village Foundation
6808 Old Glory Ct.
McKinney, TX 75071 US
About VisionBound Foundation
In 2021 we received the devastating diagnosis that Usher Syndrome Type 2A affects one of our children. This condition is the leading cause of deaf-blindness, and there is currently no treatment or cure.
Usher Syndrome Type 2A is a rare genetic disorder caused by mutations in the USH2A gene, and it primarily affects hearing and vision. Children with this condition are typically born with moderate to severe hearing loss, especially in the high-frequency range. The vision loss component is due to retinitis pigmentosa, a degenerative eye disease that usually starts in the teen years and progresses over time. It starts with night blindness, followed by the gradual development of peripheral blind spots that eventually merge into tunnel vision.
Retinitis Pigmentosa leads to severe vision loss, and in some cases, it may progress to total blindness, though the timeline and severity vary widely between individuals. While Usher Syndrome doesn’t shorten life expectancy, it does change how a child experiences the world—and how they learn, communicate, and connect.
For families facing Usher Syndrome the journey is challenging and filled with unknowns, but it’s not without hope.
We’re here to ensure the story doesn’t end in darkness but in breakthrough, connection, and light. We are a patient and family-led nonprofit organization dedicated to saving sight through cutting-edge research, gene therapy innovation, and global collaboration.
Now we are on a mission to develop a therapy to stop the progression of this relentless and unforgiving disease. We are laying the groundwork to develop RNA therapy in collaboration with scientists and clinicians from around the world. We are racing with time and are determined to defy the odds!