Dinakar Singh

And I still get calls, and we get calls all the time from people in other countries, because, for example, there's a Goldman Sachs analyst who is from Uzbekistan, and they called asking for help because...

Their family knows someone close to them whose daughter is diagnosed.

And if they get treatment, they'll be saved.

But in Uzbekistan, there's no place to get treated in Uzbekistan.

You can't just come to the U.S.

and get treated because all sorts of legal and other issues and loopholes.

And of course, then you've got to cough up the money to do it as well.

It costs a couple of million bucks.

You can't just go to London and do it because, again, the whole regulatory framework is crazy.

And so there are still kids dying of SMA.

Even in cases, in this case, for example, the family had gone around through supermarket stuff, meaning cans and signs in town raised $400,000 to get her treated.

And they couldn't find someone to take the money or find a practical way to treat her on stuff and show she was going to die or suffer.

unnecessarily because of crazy regulatory bureaucratic stuff between countries.

We've got to figure out something on the cost.

And maybe it's with these drugs, having some amount of money get set aside when there are these windfall profits to go and help charity care or things like that.

But the notion that we develop these drugs and there are kids that are dying because they can't afford them is pretty insane.

After our daughter was diagnosed, people just giving me hugs was about the best feeling on earth.

There's nothing more powerful than just compassion from friends and strangers, just to feel like you're all human together.

I think in life, at our worst moments, just getting some of people's strength and energy imbued in you a little bit gives you the ability to go and stand up and move forward the next time.