It was only last summer, while on a kite surfing holiday, Garmt van Soest observed that his right hand was unusually weak. He also noticed that his speech was gradually becoming slower. “You wouldn’t know it now but I was really the fastest speaker in the office,” he says, enunciating deliberately. The changes motivated him to see his doctor. “I was really lucky,” says van Soest, a senior manager in Accenture Strategy based in Amsterdam. “I was diagnosed with ALS [amyotrophic lateral sclerosis] in six weeks. For most patients, the process takes a year.”
Since his diagnosis in August of 2013, van Soest has been using his management consulting background to strategize how best to contribute to the ALS community. He soon met two fellow ALS patients and entrepreneurs, Robbert Jan Stuit and Bernard Muller. On 19 May the three launched an ALS-specific investment fund, called Qurit Alliance. Qurit Alliance aims to raise €100 million ($139 million) to then invest into ALS-focused private biotechnology companies and institutions to kick start projects of drug discovery and smarter design drug trials to find ALS treatments.
“This is one of the novel, innovative ventures that wants to make sure orphan disease clinical pipelines do not dry up as the pharma model and venture investment shifts to later stage opportunities,” says Steve Perrin, CEO of the Massachusetts-based ALS Therapy Development Institute.