Konsitzke isn’t a scientist by training, but through his job he’s well connected to the scientific world. Once Mason’s diagnosis was in, he started asking around about NF-1 research. In particular, he wanted to know where the bottlenecks are. What was the single thing he could do that would most accelerate research into his son’s condition? And the answer that he kept hearing was: Find better animals to experiment on.

When studying diseases, scientists often turn to laboratory animals like mice and zebrafish. They can use these so-called model organisms to work out how mutations cause diseases, and to find and test possible treatments. But the usual lab animals aren’t a good fit for NF-1. They’re too small, and they don’t react in the same way to the mutations that cause the disease in humans. For example, studies in mice suggested that a drug called lovastatin might help to address the learning and attentional problems that accompany NF-1. But when the drug was tested on actual children, in a large clinical trial, it did nothing.

To better understand NF-1, Konsitzke learned, you need a species that’s closer in both size and biology to a person, and yet is still relatively easy to raise and study. That is, you need pigs. “Pigs closely represent humans,” says Neha Patel, who directs the UW neurofibromatosis clinic. “People with NF-1 have varied cognitive deficits, from severe learning issues to subtle problems. If you imagine studying those in a rat, you’d only get a crude picture of how that translates to humans. But pigs are intellectual animals.”

That’s why, in a quiet corner of the Wisconsin State Capitol, Konsitzke was so excited to meet Shanmuganayagam. Here was someone with experience in raising, engineering, and studying pigs. Here was just the guy he needed to give NF-1 research a boost.

For his part, Shanmuganayagam was keen to take on a new challenge. “I know a lot of diseases,” he says, “but when Chuck told me [about NF-1], I thought, ‘I don’t know what this is.’ And I can’t believe I didn’t know because it’s not that rare.” Indeed, NF-1 affects at least one in every 2,500 babies, making it more common than other better-known genetic disorders like cystic fibrosis. And that figure is probably an underestimate, because many cases don’t present with obvious symptoms. “It’s under-recognized, and kids are not getting the best care,” says Patel. She’ll often see parents whose children clearly meet all the clinical criteria for the disease, and yet hadn’t been diagnosed for over a decade.

The disease has a low profile partly because its symptoms can be so disfiguring. Patients with NF-1 often “become closeted and sheltered,” says Konsitzke. “People don’t look at them or listen to them, so there’s no strong speaking voice for the disease.” The man whom Pope Francis embraced in 2013, whose face was covered in growths, had NF-1. Joseph Merrick, the so-called Elephant Man of 19th-century England, was once suspected of having had NF-1. “Our neuro-oncologist told us to take pictures of Mason now, and be prepared for his face to change,” says Konsitzke.