I am a parent of three children. The eldest, Severine, with PWS, died in December 2017, aged 47 years. She was living in a residential home and had a full and happy life.
My professional background is as a mechanical engineer. I retired in 2007 and was co-founder in 2017 of the OT4B start-up for the development of an oxytocin based treatment for PWS.
I was involved, with seven other families in the creation of PWF in 1996. I have been active in the association from the beginning and president for nine years. PWF is now a rather large association, gathering directly or indirectly more than half of the families of Prader-Willi syndrome children and well known by professionals and politicians in the field of rare disease and handicap.
I have tried to make families and professionals work together. The “best practice guide” we have built is a good illustration of a collaborative large project. I have set-up with my wife training sessions for caregivers, performing about 20 sessions per year.
The death of my daughter left a terrible void in our life but my commitment to IPWSO is vital for me. She never gave-up, so I will keep going as long as I can.