Maria Picone is the mother of a child with Prader-Willi syndrome as well as founder/CEO of TREND Community – a company that collects anecdotal information from patients and caregivers so that the information can be quantified and assessed more efficiently. The concept for the company was based on Picone’s own interactions with her daughter’s rare disease in which what she was observing with her child and with other families was not aligning with what was being reported in the medical literature.

To illustrate, Picone noted that on social media, a lot of parents were talking about issues involving sleep that her company was able to tabulate that data. “As a result of this work we’ve actually made a connection between Prader-Willi syndrome and narcolepsy. So we partnered with a pediatric neurologist at Texas Children’s Hospital to define what disordered sleep looked like in that patient population and then using this codebook that we created together, we trained our analytics engine to understand what disordered sleep looks like. And we went back out into social media and we were able to start to quantify the problem,” stated Picone.

“Fast-forward and we’re licensing our data to a pharmaceutical company that just their NDA approved for treatment for narcolepsy and now they’re using our data to help them design a clinical trial for Prader-Willi syndrome.

Prader-Willi syndrome is a rare genetic disease usually caused by an abnormality in chromosome 15 that often consists of two stages. The first stage appears during infancy in which the babies are hypotonic and often show failure to thrive symptoms. The second stage begins usually around the ages of two to six years. The most striking symptom is often hyperphagia and excessive food seeking behavior. Other symptoms can include speech problems, short stature, scoliosis, obsessive-compulsive behaviors, learning disabilities, and sleep disturbances.

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