"I want to do something to help research because it’s urgent … and because down syndrome persons make me a better person."
How do you know the Jerome Lejeune Foundation & the work of Jerome Lejeune ?
I’ve injured my hip and have had to take a break with my dancing. Between the surgery and the recovery, I won’t be able to dance for almost 6 months. Instead of being upset with my situation, I’ve come to see it as something very positive. I suddenly am presented with the opportunity to finally do things I’ve always wanted to do, but have never had the time for.
This time is a gift, and I don’t want to waste a minute of it! I’ve wanted to do something useful, something for others. I began independently researching topics I care about, like Down Syndrome. Through my research and reading, I discovered the work of Pr Jerome Lejeune. Not only was I in awe of his brilliance and scientific discoveries, but completely touched by him as a person and his work with those affected by Down Syndrome. As I read and learned more about him, I only became more passionate and convinced by his kindness and honesty. Constantly striving for truth, regardless the social and professional risks, he never compromised his integrity. He remained loyal to his science, and to his patients and the children that he cared so much about. To become affiliated with the work and legacy of such a remarkable man is truly an honor. To be a part of this, to lend a helping hand in anyway possible, is inspiring. I was very fortunate to meet with the Foundation in the US, I knew immediately that I wanted to do something to help the work of the Foundation.
You say you’re interested about Down Syndrom, why?
It’s perhaps thanks to my mum. She was a teacher for children with special needs. She taught a lot of children with Down Syndrome. I love hanging out with them. I feel that children with Down Syndrome inspire and challenge me to be a better person. I can spend the whole day with them, playing, chatting or listening, it’s easy. They are so real, so untainted by all of the negative in the world, and so open, honest, and joyful. They’re so easy to be around. When I was dancing in Boston, I helped with a special adaptative dance programm for children with Down Syndrome. Once a week, we were ancing together. I loved those moments. When I left Boston for Russia, it was hard for me to leave my family of course but also to stop this class. Because these moments were so full of joy. I tried to find some kind of similar classes in Russia but unfortunately it doesn’t exist.
And why do you want to help the medical research?
Because it’s urgent! Many people don’t know the disability, and in fact, I believe they are scared of it. They don’t even know that Pr. Lejeune is the father of modern genetics. People aren’t aware of the details. They don’t understand that having an extra chromosome isn’t a crime, that medical research is making big improvements to find a treatment, and that we must help the research. It’s urgent and very important. By raising an awareness, and helping the research, we could change the way people see this disability.
Changing the way people are looking at Down Syndrom, is that what you want to do as an ambassador of the Foundation ?
Yes, I think the first step to changing peoples hearts is to fix the images and opinions that they have in their minds. Our society is obsessed with image, it’s sad but unfortunately, it’s the way it is. If picture of a ballerina dancing with a Down Syndrome child could help people to say “this little girl may have an extra-‐chromosome, but she’s like me full of dreams and passion”, it’ll be good enough. Therefore I’m representing the Foundation, through the image of a ballerina. I’d like to do much more but it’s a good start.
What does it mean for you to be an ambassador?
This is very important to me, and I am happy to do it. As I said before, to become affiliated to the work of Jerome Lejeune, in anyway, is an honor. We must continue his work by helping the children, to support them and to defend them, since they do not have a voice. We must support genetic research. I really want to do something concrete, and to keep exploring ways that I can personally lend my assistance or talents. And to learn from those precious individuals with special needs about joy and simplicity. It’s the beginning of a great collaboration with the Foundation for me and I’ll do everything I can, to help the Foundation.
And to start the 20 th anniversary, do you have something special to say?
Yes. We are all little Jerome Lejeunes : we have to defend and take care of these children,and to help genetic research !