Paola de Donato

Personal details and general things

  1. How old are you and where were you born?
    I am 32 years old and I was born in Rome, Italy
  2. Where do you live today?
    I live in Rome, ltaly.
  3. Do you have family/husband/kids?
    I live together with my cat Gigi. Moreover, I am in close contact with my parents and my sister Alessia.
  4. What do you do for a living?
    I am an archivist. I work at “Rai – Radiotelevisione ltaliana”, the main -public television and radio broadcaster in Italy. My job consists in taking care, in every part, of the insertion of the data relating to the television programs that are digitized and inserted in the Rai Multimedia Catalog.
  5. Do you have any (special) hobbies and/or interests?
    I love to read and write, literature is my greatest passion.
  6. What is your relation to FSHD?
    I am a patient; I got my diagnosis when I was a child
  7. Which organisation do you represent at FSHD Europe?
    FSHD Italia Onlus, which in Italy offers support and aid for research in the field of FSHD.
  8. What positions do you hold at FSHD Europe?
    I’m a member of the Board, as a representative of Italy.

Life itself and FSHD

  1. How long have you been dealing with the topic of FSHD?
    As I said, I got my diagnosis a long time ago, so it’s really many years, even if I’ve only become aware of it recently.
  2. What do you hope to gain from your work at FSHD Europe, but also in your national patient organisation?
    Promote scientific research on FSHD and support patients who, like me, are affected by it.
  3. Which moment of your life would you most like to frame because it was so beautiful?
    I would like to frame every moment spent with those I love my family, my friends and my cat.
  4. What makes a day (for you) a good day?
    Read a good book, see or talk on the phone with a friend, my parents or my sister, do my job well, cuddle my cat.
  5. What criticism in your life has really brought you forward?
    My life has been shaped by failure, at work and in private life. Whenever I have failed at something, it was because I was destined for something else.
  6. How has your life changed with the pandemic?
    I have been working from home for a year and a half, in SmartWorking. The pandemic has certainly made me more insecure, I miss my “old” life, but I’m hoping to get it back soon.