The COVID-19 pandemic has been difficult for everyone; we've all had to make changes to our lives because of it. Some of us have had to make bigger changes than…
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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