Nemaline Community
In 1999, the first non-medical webpage on nemaline myopathy was launched, and in October 2004, the first Nemaline Myopathy Convention was held in Toronto, Canada. A second convention took place in the summer of 2007 in Edinburgh, Scotland. In March 2006, Niki Shisler released a book, Fragile, in which she recounted her experiences surrounding the birth of twin sons with severe NM.
Read more about this topic: Nemaline Myopathy
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“Commitment, by its nature, frees us from ourselves and, while it stands us in opposition to some, it joins us with others similarly committed. Commitment moves us from the mirror trap of the self absorbed with the self to the freedom of a community of shared values.”
—Michael Lewis (late 20th century)