Dinakar Singh

And so the diagnosis at the time was that she'd probably live to be in her mid-teens or so, but getting weaker and suffering along the way.

So my parents had been scientists.

As it happened, probably a source of my strange thinking in life, but after school in India, I'd go hang out at their lab and do mass dissections when I was six years old.

It's a typical actual activity.

But I mean, I grew up in the science world and so had enough scientific knowledge to be dangerous.

And so as you stared at this, I mean, it seems super intriguing to me.

I mean, in the first few months, it was just devastation.

When you're told there's no treatment, there's no cure, it's just a question of when and with how much pain.

You're mentally clobbered.

We first started just giving some money to St.

Bruce.

And as I started digging into the research, it became clear that, huh, there isn't as much known about this as actually one would think, given the gene we just found.

For example, why did that neurologist diagnosed her hang up in 60 seconds?

Honestly, because he didn't know anything about this.

When he went to medical school, there was no spinal osteotrophy because no one knew that it was a separate disease.

let alone one that actually affected 20,000 kids.

So technically, actually, at that time, the most common genetic killer of kids, which is a pretty incredible thing when you think about it.

Intrigue started setting in.

And so at first, my wife and I started giving money to some causes.

There were a few groups that were involved, and so we gave them a bit of money.