August 12, 2014 @ 6:21 PM
speech written by Jodi Carter and delivered at A Concert in the Garden August 1, 2014
Hi my name is Jodi Carter and I have Usher Syndrome. Five years ago I did not know what that meant. I just knew that I walked into things, tripped a lot over uneven surfaces, got called “stuck up” because I didn’t see a handshake, and couldn’t see in dark or dim surroundings. I now know that Usher Syndrome is robbing me of my sight. Yet, even today, I am still laughed at for tripping over something that I didn’t see. I have been called drunk when I had had no alcohol, because people need to have a reason for my lack of perception.
I recently viewed a video that another Usher Syndrome person posted online. Her name is Molly.........
August 11, 2014 @ 11:12 AM
by Dr. Mark Pennesi on August 7, 2014
When I first heard about Usher syndrome, the leading cause of combined blindness and deafness, I was 19, fresh out of high school and very privileged for the opportunity to work as a summer student at the Retina Foundation of the Southwest with David Birch, Ph.D. I was quite moved by the patients — their eagerness for any kind of treatment and the fear that they might pass their disease on to other family members. That was almost 20 years ago. Back then, we knew very little about the condition, especially its genetic diversity, and there were no foreseeable therapies.
Things have changed. We are closer than ever to having treatment options for patients with this challenging .........
August 3, 2014 @ 4:15 PM
by Audrey Winkels August 3, 2014
Friday night’s A Concert in the Garden was incredible. The food, the entertainment, the auction, the money raised for Usher syndrome research, the volunteers, the guests. All over-the-top incredible.
But it was more than just that.
It was inspirational.
The down-to-earth, from-the-heart messages delivered by Jodi and Ryan when they described what it is like to live with Usher syndrome on a day-to-day basis jolted everyone into a keen awareness. That you don’t have to look disabled to be disabled. That life for them is very, very challenging right now. That it is only going to get harder. That Usher syndrome is going to continue ............