A scientist who diagnosed her own daughter with an incurable genetic disorder has set up a foundation to raise funds for research towards clinical trials and started a biotech company to develop a new treatment in a bid to save her life. Dr Michelle Teng, a medical scientist and geneticist, founded the H-ABC Foundation after diagnosing her daughter, Sofia, 11, with a genetic disease that affects the nervous system, in 2016.
The mother-of-three also launched biotech business SynaptixBio in 2021 and the company has since secured a designation from the Food and Drug Administration (FDA) in the US, and entered into a licensing agreement with the Children’s Hospital of Philadelphia to develop a treatment. Michelle, who lives in Caversham, Berkshire, with her husband, Alan, 44, a managing director, and their three children, Sofia, Olivia, three, and Lyra, three, hopes human clinical trials which are set to start in 2024 will halt the progression of her daughter’s degenerative disease.
Michelle said: “I’m doing everything I can to help my daughter, it’s in my instinct as a geneticist to find a solution. We raised £200,000 through the foundation but that doesn’t even come close to the money needed to fund medical research like this, we need real capital, realistically around £13 million to fund this new drug.
