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Edison Girl's Rare Disease in Spotlight Feb 29

Alameda family is on a mission to raise awareness about Friedreich's Ataxia

An international organization which champions research for often overlooked medical conditions, has set aside Feb. 29 as Rare Disease Day and one Alameda family wants to help them spread the word.

Izzy Penston, an 11-year-old  student and her Alameda parents, Zoe and George Penston, are coming forward to share her story with the community in hopes more attention will be given to her rare, debilitating and life-shortening disease.

Izzy was diagnosed with Friedreich's Ataxia, a progressive neuromuscular disease, in 2010.

Since then she has been forced to sometimes use a wheelchair and scooter to conserve her energy, her speech has been affected, she has been diagnosed with a heart condition, and her vision has become somewhat impaired.

Read More: Edison Girl's Rare Disease in Spotlight Feb 29


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