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Old 04-16-2012, 01:26 PM
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Kevin Alexander
Join Date: Nov 2002
Posts: 162
Default Former Photog raising awareness about rare genetic disease

Hey everyone... A few months ago I shared a short documentary I produced on the rare genetic disease I have, PKU. (www.youtube.com/creativecontrolfilms) Wanted to give you a quick update in case any of you are interested...

I don't know if any of you have heard of Patient Power... They produce web videos on various medical topics... And they have a page dedicated to PKU. Well, they interviewed me about my life with PKU, and now have asked me to host their PKU videos. If you are interested you can check out my bio here: http://www.patientpower.info/bio/kevin-alexander-m-a

This disease is incredibly rare (only 50,000 in the world), and we simply do not get much research funding or media attention due as compared to other diseases. If your stations could do anything to help we'd greatly appreciate it.
"Experience, the most brutal of teachers. But you learn, my God do you learn." C. S. Lewis
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