September 15, 2014 @ 12:00 PM

by Peter Alexander, NBC News

My sister Rebecca is the most impressive person I know. Looking at her, you'd have no idea she has a disability. But her world is rapidly changing because of a cruel disorder, Usher Syndrome type III, that is causing her to go blind and deaf. Diagnosed at the age of 13, Becky is now 35 and is the face of courage. She's sharing her story in a new book, "Not Fade Away," and she sat down with me to share the latest on her health and what lies ahead.

Peter Alexander: Before your cochlear implant [last year], you said, 'I'm not scared. I'm more sad.' How do you feel now?

Becky Alexander: I feel like moving forward. I think it's sad every time you have to take that next step ......

Read More
September 3, 2014 @ 11:08 AM

blog written by Andi Nicole Horstkotte


I was born deaf/hard-of-hearing in both ears. I speak (all those years of speech therapy has paid off well!), lipread, and I sign. I do not see this as a disability because it is who I am, it’s a way of living. I love being in my silent world when I am tired of listening to it. Then my #1 fear came true. 

I am going blind.

I recently was diagnosed with Usher Syndrome. Usher Syndrome is a genetic condition that is a combination of being deaf/hard-of-hearing and having an eye disease called Retinitis Pigmentosa. I knew I had bad night-vision and had a loss of peripheral but I had NO idea that this was apart of something that would take away my sight completely. Every case ...
...
...
...

Read More


 

 

  

 The mission of Vision for a Cure is to raise awareness and compassion about Usher syndrome, as well as provide funding to those that are dedicated to research to find a cure.
email: 
Info@VisionForACure.com      mail:  PO Box 9  Bickleton WA 99322 
501(c)3 Tax ID# 46-4251515