Manufacturing Personal Cures

Siqi Chen shares a story about how founders are tackling rare diseases for their children.

"I'm not the first founder type who's been in this situation. The cofounder of Clubhouse, Rohan, his daughter has a rare disease. Her name is Lydia, and he runs the Lydia Foundation. He's going so far as manufacturing his own drugs. For very rare diseases, you can do a lot.

There are other people I've met who have done similar things. End-of-one cures exist. This is what I mean - if you're sufficiently motivated, and there's no one more motivated than a dad with a sick kid, you can go so much further than what is available as standard of care.

Even the last time we met with our primary care team, they were proposing two particular paths - one involving pretty aggressive surgery and radiation, another involving this drug. I proposed a third path, and they were discussing it. These are neurosurgeons and clinicians. They came back a week later and said, 'Actually, your path is more sensible.' The reason I was able to do that is because this disease is so rare, I am more knowledgeable about the disease than anyone in the room because they have to study 50 different cancers."