At the VisionBound Foundation, we hold this truth close.
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 restoring sight through cutting-edge research, gene therapy innovation, and global collaboration.
Every child deserves a future filled with possibility, but for those living with rare genetic conditions like Usher Syndrome, that future is clouded by uncertainty. At the VisionBound Foundation, we believe in changing that narrative—through groundbreaking research, early diagnosis, and unwavering support for families navigating the unknown.
400-700k
People worldwide
are living with Usher Syndrome, the leading cause of combined deaf-blindness
1 in 150
People carry a mutation
in the USH2A gene—the most common cause of Usher syndrome. Both parents must carry a mutation for a child to be affected.
0
Approved treatments
or therapies currently exist
for Usher Syndrome.
What began as our family’s journey is now a global mission of hope.
In 2021, our family received the devastating diagnosis of Usher Syndrome Type 2A — a rare genetic disease that causes both hearing loss and progressive vision loss. With no treatment or cure, we turned our grief into action, connecting with scientists, clinicians, and families worldwide who share our determination to change the future.
Today, the VisionBound Foundation is racing against time to advance therapies and restore hope. Our work spans research, clinical trials, advocacy, and global partnerships—because every child deserves a future full of possibility.
Gene Therapy
Research
Targeting inherited
retinal diseases
Clinical Trials
Support
Funding & facilitating
promising studies
Patient
Advocacy
Empowering individuals & families
affected by blindness
Global
Partnerships
Collaborating with labs,
universities, & biotech firms
A World-Class Team, One Shared Goal
Breakthroughs don’t happen alone. At VisionBound Foundation, we’ve assembled a world-class team of scientists, clinicians, and advisors to guide our efforts in developing RNA therapy for Usher Syndrome Type 2A. Together with leading institutions worldwide, we accelerate discovery and bring hope to families facing blindness.
