"This is one of the few (chances) you have to discover what is the cause of the curse of my family." It was the same glassy-eyed stare that had afflicted his father and two sisters at the beginning of their mysterious illnesses. "At that moment, I knew what FFI probably was," he said. He said, ‘I’ll stop sleeping, and within eight or nine months, I’ll be dead 
 
 Silvano eventually referred himself to the University of Bologna’s sleep unit for further study, but he was under no illusions about the course of the disease. “He said, ‘I’ll stop sleeping, and within eight or nine months, I’ll be dead,’” one of his doctors, Pietro Cortelli, told me in a phone interview. As Silvano had predicted, he died less than a couple of years later, but he left his brain to science in the hope that it might shed some light on the strange disorder that had plagued his family. Patient zero 
 
 Silvano’s family have mostly remained silent about their struggle with FFI, but about 15 years ago they opened up about their history to the writer DT Max, whose book The Family Who Couldn’t Sleep offers an engrossing portrait of a family living in fear of their own genes. Together, they set about solving the mystery of the illness. Although their efforts could do nothing to save Silvano or two other family members who would succumb shortly afterwards, extensive testing eventually found the culprit: a misshapen protein in the brain called a prion, caused by a tiny genetic mutation. The size and shape of a walnut, in Silvano’s brain the thalamus appeared to have been riddled with boring worms 
 
 This made it a relative of Creutzfeldt–Jakob disease (CJD) and Mad Cow Disease – two other prion diseases that were garnering serious scientific interest at the time. The spongy tissue that Gambetti found in Silvano's thalamus was full of tiny holes: the aftermath of prions that left dead cells in their path. Cortelli thinks this is a pale remnant of the REM stage that punctuates the deeper stages of sleep; in some ways, it looks like they are acting out dreams. Worse still, it was the form that should progress most rapidly. “When the symptoms reared themselves, he couldn’t do anything,” says Schenkein. Lugaresi passed away at the end of December last year after decades of working with people with FFI, but Roiter and his colleagues at Milan and Treviso believe they may finally be close to the cure they had all dreamed of. Join the conversation See the latest news and share your comments with CNN Health on Facebook and Twitter.
– In 2010, Sonia Vallabh noticed her mother acting oddly. "She was fitful and couldn't really tell you if she'd been awake or asleep," Vallabh tells CNN. Soon, the 52-year-old couldn't recognize her daughter and would spasm and speak in tongues. Upon her death months later, Vallabh recalls her father, a doctor, warning, "Her disease was genetic." Those words would change the course of Vallabh's life. Vallabh and her husband both quit their jobs and are now getting their PhDs in biology at Harvard Medical School in the hope that they can find a cure for fatal familial insomnia before it takes her life. FFI is caused by a gene mutation that Vallabh has inherited as a member of one of the few affected families in the world. Says a member of another such family: "It's been a disaster. A brutal suffering." Research on FFI began in 1984 when an Italian man named Silvano urged sleep scientists at the University of Bologna to discover "the cause of the curse of my family." Researchers watched as Silvano, 53, struggled to sleep while his body jerked him awake, preventing the restorative stage of sleep. A brain analysis later revealed two sections of his brain's switchboard, or thalamus, had been destroyed by abnormal prion proteins, affecting the sleep-wake cycle. For now, relatives can only undergo a genetic test and wait for the disease to hit, usually in their 50s. But Vallabh wants a different outcome. "The hope has to be always that you find a cure," says a pathologist, who imagines a time when "fatal" will be erased from FFI's name. The BBC reported last year on a drug that may keep abnormal prions from forming. (More on Vallabh and her husband here.)