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Rachel, Guest Tweeter

July 8, 2014

My name is Rachel. I have Usher syndrome and my hope is that we find a cure. 

I was first diagnosed with deafness as an infant and was one of the first 200 children in the U.S. to receive a cochlear implant as part of a clinical trial. How did I get on that short list? My parents stayed on top of the latest research and reached out to numerous professionals. Years later, at the age of 19, I would come to find out that I had a new battle to overcome. 

One month prior to starting my first year at the Savannah College of Art and Design, I was diagnosed with retinitis pigmentosa. I was losing my sight.

Because of scientific advancements in the field of hearing loss, I was able to grow up with the ability to hear and speak. I will forever be grateful for that, however I cannot live a day in my life without vision. I need and want history to repeat itself; I want my vision loss cured.

There are about 50,000 people in the U.S. living with Usher syndrome. It would be wonderful to see a day when we can become pioneers in this space and find a cure for not only deafness but vision loss as well. This weekend, world-renowned Usher syndrome researchers will be gathering for the annual Usher Syndrome Symposium hosted by the Usher Syndrome Coalition. 

I’m getting involved AND so should you!

This Wednesday, July 8th, I will be taking over the Usher Syndrome Coalition’s Twitter handle, @UsherCoalition, and live tweeting the symposium using the hashtag #USH2014. I will be providing updates on the conference, information on the latest research and want to engage with YOU about your experiences with Usher syndrome. 

Keep your smartphones out and tweet me @UsherCoalition with the hashtag #USH2014 and I may even re-tweet you! If you are not at the conference feel free to join the conversation. This is the first step in spreading awareness and we need your help. 

WE need to find a cure for Usher syndrome. I want to live in a lifetime where the impossible is in fact possible.

Rachel graduated Summa Cum Laude from Savannah College of Art and Design with a Bachelors degree in photography. She also attended the University College London in the United Kingdom where she earned a Masters in anthropology. Rachel is a world traveler who has been to 18 different countries since her diagnosis eight years ago. She will be heading to Cameroon, in West Africa, this fall to serve in the Peace Corps for two years. 

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