Cory and Joanie

Cory and Joanie have a condition known as Usher Syndrome caused by mutations in the USH1C gene. Usher Syndrome is a combination of retinitis pigmentosa and congenital hearing loss. Although the cochlear implants they received as very young children allowed their speech to develop normally, their hearing is not completely normal. Cory has written a song about his hearing impairment which he recently performed publicly with a high school classmate. You can watch a performance of this song on YouTube by clicking here.

As I watched this performance, I thought “Wow, this AND a retina problem!”

Joanie is also very artistic and wants to be a film director. When I asked her how Usher Syndrome affected her she said:

“When I found out that I was losing my vision, I was more than a little freaked out. As my sight gets narrower and narrower, it becomes harder and harder for me to navigate my surroundings. I was pretty scared of what the future held for me. How could I pursue my dream of being a film director when vision is such an important part of that job? But the research being done in Iowa has given me hope, and I can’t thank everyone who has supported that research enough for that.”