Louis Shepard loves music, playing cricket and watching Formula 1. 

The 15-year-old was born with Usher syndrome 1B, a rare genetic condition that causes profound hearing loss, a progressive decline in vision from teen to adult years and balance problems. 

Throughout his life, Louis has benefited from advances in medical research. 

A cochlear implant at 11 months old has enabled him to enjoy many of the same activities as his peers. He enjoys listening to ‘retro’ music with his mum Emily and is considering music production, along with business or law, as a future career. 

But as his vision has declined he now only has 15 degrees of peripheral vision compared to the standard 180 degrees. 

Scientists at CERA are developing treatments to save the sight of people living with Usher syndrome. 

Louis and Emily are grateful for research efforts to help people with hearing loss, and hope that vision scientists will receive an equal level of funding as the early work to develop the cochlear implant. 

“My vision is not the only thing about me. It does not define me,’’ says Louis. 

“Research has done a lot for hearing but not as many scientists have focused on vision loss. 

“It is amazing that there is now research that could stop people losing their sight from Usher syndrome.” 

This story was originally published in Share our vision: Annual Review 2024.