I am reaching out today to raise awareness about an illness which is near and dear to my heart. I was diagnosed with Episodic Ataxia in 2005, but have lived with it since birth. Ataxia is a progressive disease that attacks the nervous system. At this time there is no...
Shire, the Irish pharmaceutical company that specializes in the treatment of rare diseases, bought the American group NPS Pharmaceuticals in February 2015 for US$5.2 billion. There have been other financial deals like this recently, always involving amounts in the billions of dollars. For some pharmaceutical companies, developing treatments for...
The Relentless Work Editorial This is our second edition of the year, the first having come out in January. A lack of texts and resources is responsible for this long break. Here is some recent news I’d like to share. A few weeks ago, during the annual general meeting, a...
When armed conflicts, plagues, and cataclysms are making headlines, only few medias cares about the fate of millions of people in the world suffering of hereditary disabilities. Even so, some countries do care about it. The Institute of Genetic Diseases Imagine was inaugurated June 28 2014 in Paris, France. It...
The Evolution of Name Editorial It’s official, CAFA has reached a milestone. We have a new name: Ataxia Canada! As always, opinions varied on the subject. The majority were open to the change, but there were some opposed to it. As for me, I think it’s progress. The change was...
My Thanks Editorial “The Walk to Fight Familial Ataxias has been a great success. We have been able to raise over $95000, over the last 5 years, with all 4 provinces working together. I wish to thank you for continuing to support us by coming to our walk in Whitby....
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