Dinakar Singh is one of the founders of the Spinal Muscular Atrophy Foundation, and he is also on the Columbia University Medical Center Board of Visitors. In addition,
he is also a member of the Trilateral Commission. He also serves on the Yale University President’s Council on International Activities.
In 2000, Loren Eng and Dinakar Singh had a daughter, Arya, who was born with spinal muscular atrophy, or SMA, a progressive and deadly disease in which the nerves that control the muscles slowly waste away. There are no cures and no proven treatments for SMA. Also known as floppy baby syndrome, it’s a major genetic killer, hitting one in 8,000 infants and toddlers. Children with it don’t have a crucial gene that motor neurons need to survive.
Loren and Dinakar Singh decided to get the federal government to take action to cure this disease. National Institutes of Health neurologist Kenneth Fischbeck, in 2002, had already proposed an innovative crash program to develop prototype drugs. However, by early 2003 the agency hadn’t yet handed out research contracts for the program, due to the painstaking federal contracting process.
The process was not advancing. Loren rounded up 50 scientists, including DNA discoverer James Watson, to petition
the NIH for more SMA funding. She hired a lobbyist to work on uniting various SMA patient groups, including FightSMA, to conduct a letter-writing campaign to Congress. Dinakar Singh and his wife also tried to get drug companies to work on
developing the needed medications.
Singh donates his profits from investing into this project.