Origin and Mission
Facio Therapies is a single-minded pharmaceutical company. Our focus is entirely on one disease: FSHD – short for facioscapulohumeral dystrophy.
Despite over 35 years of basic research into FSHD, there is no approved therapy. In the early teens of this century, the consensus emerged that FSHD is caused by the presence in skeletal muscle of a protein that should not be there. That scientific breakthrough sparked hope throughout the FSHD community, but has proven difficult to translate into real progress towards a therapy. In September 2014, three prominent members of the FSHD community decided to take matters into their own hands. Kees van der Graaf (Netherlands), a former member of the Board of Directors of Unilever; Bill Moss AO, a former executive director of the Australian investment bank, Macquarie Group; and Neil Camarta (Canada), President and CEO of Western Hydrogen Ltd and a former executive at Shell, jointly founded Facio Therapies. Kees’s elder son, Bart, has FSHD. Bill and Neil have FSHD themselves.
”Facio” not only refers to the full name of FSHD, but also to the Latin verb, faciō, which (among other things) means to make, to build, to bring about. We aim to meet the medical needs of all people with FSHD, and therefore enshrined this double mission in our articles of association:
• A product mission: to develop safe and effective therapies that stop the progression of FSHD. We use the plural form, “therapies”, because the variation between FSHD patients is so large (even patients from the same family may have very different symptoms) that in order to treat all people with FSHD more than one drug may be needed.
• A socio-economic mission: to maximize access to therapy by ensuring affordable pricing, and to allocate 50% of our future net profits to both medicinal and non-medicinal programs that give people with FSHD a better quality of life.