Monday, 28 July 2014
Last updated 1 hour ago
Sep 16 2011 | 4:51am ET
How much would you pay for a cure for your child’s crippling, terminal disease?
TPG-Axon Capital Management’s Dinakar Singh has an answer to that awful question: $100 million and counting. And the investment may be paying off.
Singh’s daughter, Arya, suffers from spinal muscular atrophy, a disease that affects just 25,000 people in the United States. There is no treatment—and no one was working on one. Now, after five years and $100 million, there are four possible ones on the horizon.
"I don’t think there’s a budget on your daughter’s life,” Singh told Bloomberg Markets magazine. “As long as there is a chance of doing something and we have the ability to do it, we will do it.”
Arya, was diagnosed with the disease in 2001 at the age of just 19 months. The disease attacks the motor neurons that control muscles, which causes muscles to waste away.
“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 added.
Luckily for Singh, the gene that causes SMA was discovered in 1995. He says he wouldn’t have spent so much, founding the Spinal Muscular Atrophy Foundation, if finding a treatment or cure were less likely.
“You had this terrible gap,” he told Bloomberg. “There was no one saying, let us take these interesting discoveries and come up with something that could be a drug.”
So Singh poured his resources into the science.
“We have focused on having lots of shovels ready and having the maps ready and having all the supplies ready, so companies are willing to prospect for SMA drugs,” he said. “Make it easy for companies, take the risk down for them so they can get a sense cheaply and easily whether there is something there.”
To date, four have—three with the SMA Foundation’s help. One drug is in safety testing, another could be in human tests by the end of the year and a third could be ready for tests in 2013.
Singh isn’t the only alternative investments honcho pouring part of his fortune into finding a cure for a disease that has struck his family. Gareth Staglin and Alexander Silver, of private equity firms FTV Capital and P2 Capital Partners, respectively, have their own causes.
Staglin has helped raise $135 million for neural research; his son, Brandon, suffers from schizophrenia. Silver’s son suffers from a rare skin disease called epidermolysis bullosa; he hopes to raise $10 million to find a good treatment for the ailment.
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