If your daughter was diagnosed with a disease that will gradually destroy her muscle cells, what would you do?

In 2001, Dinakar Singh’s daughter was diagnosed with SMA – Spinal Muscular Atrophy. It’s the largest genetic killer of children in North America. Realizing that SMA research was minimal, and fearing for his daughter’s life, Singh invested $100 million of his own money to fund the SMA Foundation. The Foundation has collaborated with pharmaceutical giants such as Novartis and Roche, which has led to the clinical trial of a potential treatment. Working as a Wall Street hedge fund manager, part of Singh’s success has been recognizing the incentives that work for the pharmaceutical industry, and making them work in his favour.

Singh says, “We knew so little we had no idea what to expect. It was bad enough to come to grips with what it was and it was even more salt to the wound to realize that there was no one focused on it day to day to make a difference.”

The Foundation is able to accelerate research by sharing the information they discover. Singh explains, “We have our own Foundation science team. What the team has done is build up essentially a free library meaning that we can give it away. Unlike a company, we don’t need to own it”

It’s not easy to define rights but as a parent, you realize the urgency in finding solutions.

“There’s something remarkable about desperate parents having to find a disease for companies that are worth $150 billion but if you want a drug sometimes you have to do what it takes.” – Dinakar Singh

Expressing this urgency, Singh says, “I know healthcare is a right in the sense that it’s the most important thing to us. And yet at the same time we’re confronting the ugly reality that there are limits to what we can do and there are costs to what we can do…and now we’ve got to figure out how.”

That’s exactly what the Access Our Medicine declaration is about. We know every father can’t afford to donate $100 million to start a foundation. But we can add our voices now to support a system in which every father can count on treatments being there when his children need them.

Add your voice today: www.accessourmedicine.com

Read more about the SMA Foundation and its collaborators here.