'5 years ago, there was no hope.' Now, an artist uses TikTok to raise awareness of a 'life-changing' vision treatment

A young Ontario man who used his creative talents and the power of social media to advocate for the blind community is now recovering after being among the first in his province to receive a rare and expensive gene therapy to help his vision loss.

A young Ontario man who used his creative talents and the power of social media to advocate for the blind community is now recovering after being among the first in his province to receive a rare and expensive gene therapy to help his vision loss.

Adam Brown was born with retinitis pigmentosa, a degenerative eye disease that significantly impacts his vision. He has difficulty seeing at night time, reading small print and his peripheral vision is affected. The condition gets worse over time and for some people it often leads to blindness.

“It makes it difficult to do things like play sports, read or play video games – things that you wouldn’t think would be difficult can be very difficult for me,” Brown told CTV National News.

But the disease hasn’t stopped the artistic 19-year-old, who studies music at York University. The talented pianist is also a voice actor and found social media as a creative outlet to help build awareness for the blind community, his condition and possible solutions.

“The blind and visually impaired community is not small but its super quiet and super overlooked” says Brown. “I feel there is a general lack of awareness of what having a visual impairment actually does and how it impacts people’s lives.”

Brown has used TikTok videos to showcase his condition, while highlighting a gene therapy called Luxturna, something he’s been advocating for for years.

Approved by Health Canada in 2020, Luxturna is a gene therapy treatment that slows and may even restore some vision loss due to retinitis pigmentosa or Leber congenital amaurosis, caused by mutations in the RPE65 gene.