Bloomberg reports that Goldman Sachs partner Dinakar Singh discovered in 2001 that his 19-month-old daughter, Arya, had a crippling genetic disease called spinal muscular atrophy. The malady makes the nerve cells that control muscles gradually deteriorate. There are no treatments, let alone a cure, Bloomberg Markets magazine reports in its October issue. Worse still, while the gene causing the ailment had recently been discovered, nobody in the drug industry was doing much about it, he says.
"I was fearful and anxious that treatments would be developed, but far too late to save Arya," says Singh, 42, who founded and runs New York hedge fund TPG-Axon Capital Management LP, which has $8.1 billion in assets. "We didn't want to find out 25 years later that the science was really there but there isn't a drug because nobody focused on it."
Singh, who left Goldman in 2004, has spent almost $100 million of his own money to create and fund the Spinal Muscular Atrophy Foundation. He wants to discover and develop a drug that he hopes will help his daughter, who is one of 25,000 SMA patients in the U.S. Children with severe forms often die within a few years, while those with mild cases can live a normal life span with supportive care. Arya, 11, and starting sixth grade, uses a wheelchair.
Singh's foundation is making progress. It's collaborating with Novartis AG, which may bring a drug into human tests as soon as 2013, says Mark Fishman, research chief for the Basel, Switzerland-based drugmaker.
Read more at http://www.sfgate.com/cgi-bin/article.cgi?f=/g/a/2011/09/06/bloomberg1376-LR3QQA07SXKZ01-0HM8202AR69TE4RI6U6L7SK5G4.DTL&ao=all
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