I am the co-chair of the Patient Advisory Board of ALS Patients Association (The Netherlands), which is active in advising the board among others on research applications that we review from a patient perspective.

Today (2025), I am 74 years old and have been diagnosed with PLS, almost four years ago. During my career I was an epidemiologist and a professor in Social Medicine. I was dean of medicine at the University of Amsterdam. I have sat on many committees at the national and EU level that have reviewed research proposals.