I'm the Technology Editor at Forbes India and I love writing about all things tech. Explaining the big picture, where tech meets business and society, is what drives me. I don't get to do that every day, but I live for those well-crafted stories, written simply, sans jargon.
Image: ShutterstockWhen Elon Musk kicked off a conversation in a digital room on Clubhouse on February 1, it sparked off interest in the iOS-only audio-chat app among India’s entrepreneurs and venture capitalists. More of them are joining it, and tweeting about FOMO (fear of missing out). The one-year-old San Francisco-based startup behind it, Alpha Exploration, has already reportedly hit unicorn status after its January series B funding, led by investment firm Andreessen Horowitz. It raised $100 million, and was valued at a billion dollars after the funding, according to news site Axios Media. While Clubhouse has also become the latest must-be-on-it social media platform for celebrities and politicians, what is lesser known is co-founder Rohan Seth’s personal battle, along with his wife Jennifer Fernquist’s, to save their little daughter, Lydia, from a rare, but devastating genetic disorder. A message on LinkedIn and an email to a common Clubhouse address for Seth and co-founder Paul Davison, hadn’t elicited a response at the time of this story, but here is what’s on the internet, from Seth’s own posts. Lydia Niru Seth, named after her late grandmother, was born in December 2018, and it became apparent that something was wrong when she started having seizures soon after birth, Seth recalled seven months later in a blogpost on Medium. “We heard everything from ‘it's probably viral, go home’ to ‘paperwork for genetic testing is really hard’. ‘Meanwhile, let's keep baby sedated’,” Seth had written in June 2019, on Twitter.Eventually, a genetic test showed that Lydia had a tiny, random mutation in a critical gene that would affect her brain functions, causing severe disabilities and suffering. “She will not sit up, crawl, walk or talk. Some kids have died,” Seth wrote in his post. But he and Fernquist also discovered that a potential treatment might already exist. The parents didn’t carry the mutation; it had happened spontaneously in the baby, they found. “We were told her disease was too rare, and there was no treatment, but neither is true. There are millions of children with severe mutations like Lydia’s—and the technology to silence these mutations already exists,” he wrote. The new parents pored over hundreds of scientific papers, even translated foreign medical records, contacted top scientists and raised $1.5 million for Lydian Accelerator, which they had started as an open-sourced effort to collect and share all relevant information that they believed could not only help their daughter, but also other families. The technology they came across is called Antisense Oligonucleotides (ASOs) and it can “silence the mutation at the source”, Seth wrote. The type of genetic disorder that Lydia suffers from is the result of just one wrong piece of code in her genetic make-up. With such ‘monogenetic diseases’ one can pinpoint the exact cause of the problem, which makes them “extremely treatable” with ASOs, according to Seth. Since the first approved drug in 2016, ASOs have successfully halted severe diseases like Spinal Muscular Atrophy and Batten’s Disease. Unlike traditional drugs that target proteins (the hardware), ASOs target the RNA (the code). These have repeatable properties, making customisation remarkably easy. By modifying a few characters of code, without changing the chemistry or dosing, an ASO can be designed to target any mutation, he wrote.