Meet Rohan Seth, the Clubhouse Co-Founder Who is on a Mission to Help His Daughter
The new social media app Clubhouse has dominated conversation since the start of this year for its exciting possibilities for connecting to others in the pandemic era. After securing a US$100 million investment in January and finding a fan in Elon Musk, the live audio, invite-only app is a hot commodity right now and has made tech industry stars out of its founders Rohan Seth and Paul Davison. Although the two are quite press-shy, Seth has been hard at work on another project close to his heart that he wants everyone to know about: an accelerator program to customise genetic treatments for children born with severe gene mutations.
When Seth and his wife Jennifer welcomed their daughter Lydia in early 2019, they couldn’t have predicted the hardship that would follow. Born with a mutated gene named KCNQ2, which affects brain function, Lydia started having seizures from birth. She was classed as “severely disabled” by doctors and subsequently was unable to progress “beyond a few months of age without ever having the ability to crawl, walk or talk,” says Seth.
Quick Father’s Day update! Lydia is 18 months today. She’s very physically & mentally disabled, but sweet & happy for which we are grateful. We are hoping to start her gene silencing treatment this Oct and will keep on fighting to give her & kids like her a better future! ?? pic.twitter.com/ljbuf94KOo— Rohan Seth (@rohanseth) June 21, 2020
The Stanford University graduate founded Lydian Accelerator, a non-profit group named after Lydia later that year, to create custom genetics treatments for his daughter and others like her, while routinely chronicling the journey on his website, in the hope that his research would shed light on how common genetic mutations are.
Through extensive research and conversations with leading scientists, the couple discovered a technology called antisense oligonucleotides (ASO) which can combat the mutation in its infant stages, giving their daughter and others like her a chance of recovery. Though the ASO technology would need to be customised for every patient, which would take months of research, the couple decided to tackle this problem the only way they knew how—as computer scientists—by open-sourcing their daughter’s treatment and making it available to all, providing others with the tools to advocate for their child’s health too.