Organization: Fondation DUX and AMIS FSH
City and country of residence: Paris, France
Education: Masters in Geography
Profession: unemployed due to disability, previously I worked in marketing and communications
Hobbies and skills: my family, my friends, contemporary art, electronic music and DJing, aperitifs with friends,
Relationship to FSHD: I have been diagnosed for about 30 years. Today I live with it rather well. I like to meet other people with this disease to try to have fun. What matters most to me is laughing and enjoying life and not just hoping for a cure.