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Alpers in the UK (1 viewing) (1) Guest
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TOPIC: Alpers in the UK
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haileyswish (User)
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Alpers in the UK 9 Months, 1 Week ago Karma: 0  
 
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dwilkinson (Admin)
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Re:Alpers in the UK 7 Months, 3 Weeks ago Karma: 1  
Hello,

Are you Jonathan Pearce? either way welcome How did you find us?
Your story is so sad and is a direct result of the lack of education and more important awareness. We recently had an event we hosted and a specailized doctor quoted that 1 in 5000 doctors would be able to recognize a mito patient. http://www.brittanywilkinson.org/joomla/index.php?option=com_content&task=view&id=13&Itemid=28
(The second video on the list is his speach.)
I have spent hours and hours praying, hoping, wishing that Brittany's suffering would end, never thinking to myself am just glad she is still here. Mitochondrial disease is so diverse and Brittany carries three mutations. Your story fuels our fight because there are many who die each year and the UMDF.org doesn't get near the money needed for research as any of the well known disease do. Brittany just turned 16 and she has yet another surgery tomorrow. Everyday is a fight and our sole focus is to find a cure to this horrible disease.
 
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