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Thursday, February 14, 2013

Usher Syndrome in the News!

Thanks to me working out of town this week and my co-worker offering to drive us, I had some time to pull out my computer and do a few write ups for the blog to update everyone. Normally at this time of the year I don't have much time to blog, but this week I lucked out and took advantage of my time in the car!

So here is the backstory (and more detailed version) to all of the press coverage last week! Jennifer Lentz, the scientist and researcher of Usher Syndrome 1C from LSU in New Orleans called me on Tuesday of last week to let me know that her article had been published in regards to a balance and deafness cure in mice using an ASO drug therapy treatment. It took almost a year but got published in Science Daily, which is huge! Basically she injected mice with the Usher 1C mutation and treated them with this ASO drug. It seemed to restore their hearing and reversed their balance issues. This is a very promising treatment for the Usher community as a whole, but it’s still in the works, big time. It’s still years away from being in clinical trials and the vision aspect of Usher Syndrome has not yet been addressed because the mice are not old enough to have any vision loss yet. Either way, she is working on 1C and it’s a grass roots effort by herself and her team… when it comes to finding research funds, grants, hiring people to expand this research, it’s all very difficult with funding being cut from every direction, but she isn’t letting that stop her.

She asked if I would mind being interviewed by the Associated Press because they wanted to pick up the story as soon as possible. Of course I said I didn’t mind, and I got a call Wednesday while I was at lunch. She asked if they could come and take some pictures, but with the time crunch she was on and being that she was located in New Orleans, I offered to send her a few pictures we took around Christmas. Little did we know that we would be in USA Today! People from all over the country were reaching out to us to let us know that they saw the article and the picture in their hometown papers. I thanked her thoroughly for picking up this story because word of mouth and awareness about Usher Syndrome is where it all starts! That’s why I was trying to get in touch with the local news organizations to pick up the story. If people around this area are more aware of the Usher 1C genetic disorder, then more people might consider getting tested for something like this. We have met a number of people whose children were born deaf and they had never even heard of Usher Syndrome. Therefore, they did not find out their children had it until early adolescence when they started to lose their night vision. The only reason we tested was because I had family history of Usher Syndrome. Otherwise, we may never have gotten the genetic testing done. And let me say, I’m so thankful that we did. My goal is to spread awareness as much as possible.

Here is a link to one of the articles that included our family picture

And here is the link to the article in USA today

Which leads to our TV debute! KATC TV 3 didn’t want to pick up the article put out by the AP, but they wanted to do their own story on Hunter living with Usher Syndrome. So on Thursday of the same week, they called and asked what would be a good time to come and do the story from our house. They wanted to come the very next day and air it on the evening news. So when we got home that night, we were in a mad dash to make our home look as neat and not lived in as possible! They came at 7am on Friday and the reporter Akeam Ashford was such a pleasure to work with. As uncomfortable as it made me to do this story about ME and MY family and the condition MY child has, it was the perfect opportunity to get the word out there. I’m glad we did it and I hope to be able to do more of it in the future.

Next post…. Eye on Jacob Fundraiser

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