September 25th is International Ataxia Awareness Day! The National Ataxia Foundation (NAF) has great resources to help spread the word and show our solidarity for the Ataxia patient community; on…
The US Food and Drug Administration have just approved a genetically engineered swine research model for the rare disease ataxia telangiectasia for commercial use. The model, officially named the ExeGen…
Christopher Barker is everything you'd expect in a 3-year-old. He's happy, loud, and full of life, so it was a devastating shock to hear that he had a fatal disease,…
My name is Alan. I cross many borders as a person with a rare disease. These borders are physical, geographical and psychological. Crossing so many borders has earned me the…
Kathy Dzembo felt hopeless with her great-nephew's rare disease so she did what she does best: bake. Connor's scary diagnosis was that of a neurodegenerative disorder called ataxia-telangiectasia, an autosomal…
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