I found Alvaro Alvarito with low vision bureau on Facebook. He also has a podcast. I've listed both links.
Facebook link:
http://www.facebook.com/mrmagoony
Podcast link:
http://lowvisionbureau.podomatic.com/
Here is an interview with Danny and her Mom about the emotional part of having an eye disease and how this Mother and Daughter cope with it...
http://lowvisionbureau.podomatic.com/player/web/2011-11-13T10_09_06-08_00
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