How old are you and where were you born? I am 52 years old and I was born in Moscow (at that time the capital of the USSR).
Where do you live today? At this moment, I live in the Netherlands.
Do you have family/husband/kids? I have a husband and two sons. 18 and 15 years old.
What do you do for a living? I am actually a housewife. But I am also working on my PhD in psychology at the University of Leiden. And do volunteer work with FSHD organisations.
Do you have any (special) hobbies and/or interests? I like sports. And reading books. And I love travelling!
What is your relation to FSHD? My youngest son was diagnosed with FSHD almost 6 years ago.
Which organisation do you represent at FSHD Europe? At FSHD Europe, I represent FSHD patient group of the Netherlands.
What positions do you hold at FSHD Europe? I am the President of FSHD Europe.
Life itself and FSHD
How long have you been dealing with the topic of FSHD? Our youngest son was diagnosed with FSHD at the age of 10, which is almost 6 years ago. It came as a big shock, as we do not have FSHD in our family. And never heard of such a disease before.
What do you hope to gain from your work at FSHD Europe, but also in your national patient organisation? By working at FSHD Europe and at the National FSHD organisation, I hope to raise the awareness of this disease in the world, help people to deal with it, and do whatever I can to bring closer the day when the treatment for FSHD arrives.
Which moment of your life would you most like to frame because it was so beautiful? I have had many beautiful days. I guess I’m lucky in this way 🙂 but if I have to choose one, it would probably be my wedding day.
What makes a day (for you) a good day? I am a very organised person. For me a good day is a day when everything goes as I have planned.
What criticism in your life has really brought you forward? To be honest, I’m not good with criticism. It really upsets me rather than brings me forward. But I am working on it!
How has your life changed with the pandemic? I miss travelling and going out a lot. But on the other hand, I really enjoy time with my family. My husband stays home more often, children too. And we do a lot of walking together!