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“Our stance is that the South Korean government will adhere to the 12th SMA, which was agreed upon and implemented in a legitimate manner.”

They learned well into Catherine’s 2008 pregnancy that they were both carriers for SMA, meaning there was a 25% chance their child would be born with the muscle-wasting disorder.

More established SMA charities tended to hedge their bets, spreading money around to multiple programs.

On May 24, the FDA approved Zolgensma to treat children under 2 with all forms of SMA.

Carbona struck a deal with Nationwide Children’s in late 2013, getting AveXis the exclusive right to develop an SMA treatment using the hospital’s inventions, including Kaspar’s, in exchange for stock.