Who are we?

« When receiving the diagnosis, so many questions come to mind. We can’t imagine that researchers are already looking for answers, and that there is hope…
and we will do everything to transform this hope into reality. »

Caroline Covini, Vice-president

« When receiving the diagnosis, so many questions come to mind. We can’t imagine that researchers are already looking for answers, and that there is hope…
and we will do everything to transform this hope into reality. »

Caroline Covini, Vice-president

Our members

Father of Matteo (2018) with MECP2 duplication and Nyssa (2015)

Researcher in the pharmaceutical industry (Austria)

Mother of Matteo (2018) with MECP2 duplication and Nyssa (2015)

Researcher in the pharmaceutical industry (Austria)

Father of Philipp (1997) with MECP2 duplication and Susanne (1990)

Retired factory manager (Austria)

Mother of Philipp (1997) with MECP2 duplication and Susanne (1990)

Commercial employee (Austria)

Mother of Jan (2020) with MECP2 duplication und Theo (2017)

Expedition employee (Austria)

Father of Jan (2020) with MECP2 duplication und Theo (2017)

Teamleader (Austria)

Ambassador in Austria & Account Auditor

Ambassador in Australia

Mother of Zac (2022) with MECP2 duplication syndrome

Ambassador in Poland

Mother of Kacper (2020) with MECP2 duplication syndrome

Ambassador in Germany

Mother of Leon (2019) with MECP2 duplication syndrome

Ambassador in Austria

Mother of Ben (2022) with MECP2 duplication syndrome

Ambassador in Switzerland, Spain & South America - Spanish translator

Ambassador in Slovakia

Mother of Leonard (2020) with MECP2 duplication syndrome

Ambassador in Greece

Father of Lukas (2011) with MECP2 duplication syndrome

Our MECP2 children

Youssef Max was born in Hamburg (Germany) in 2021 and diagnosed in June 2022. He is a very friendly little boy. Youssef loves bright colours like lights and his toys.

Sacha was born in August 2015 in Brussels. He was diagnosed when he was 5 months old after numerous hospital admissions. Sacha loves cuddles, he's very curious and now that he's crawling he loves discovering and touching everything, he loves people and smiling at them, he makes cuddly toys for other children. And what he loves most of all is his big brother, Maxime. He loves being close to him and playing with him.

Victor was born in 2018. He was diagnosed in 2020. Victor loves books, musical instruments (his luminous piano and his daddy's Yukulele!). He loves spinning things around and most of all, he loves to eat!

Born in Austria in 1997 and living south of Vienna. MDS was diagnosed in 2021. Philipp loves all types of music. He likes going for walks and excursions, playing puzzles and listening to stories read to him. In the summer, he enjoys swimming with his family. Philipp likes change and is a very sociable young man.

Born in Austria in 2007. Lukas loves going to teenage discos and hanging out with nice people.

Born in 2018 in south-west France.

Born in 2016 in Cantal (France) and diagnosed in 2019. Jean is passionate about large motor vehicles (tractors, lorries, etc.), animals, farming, horse-riding and swimming.

Born in 2014 in Andorra and diagnosed in 2017. Aleix is a very happy and curious child. He loves playing with cars, looking at books and doing creative dance moves to music. Aleix is an energetic and social boy who loves to be around people.

Born in 2020 in Wels (Upper Austria). Jan is a happy boy who loves music, food and, above all, his big brother.

Born in 2018 in Vienna (Austria) and diagnosed in 2021. Matteo likes to eat and listen to music. He likes playing with cars, noisy trains, and looking at books.

Born in 2018 in Finistère (France) and diagnosed in 2019. Pierre loves musical and bright toys. He loves reading books and aperitif time (especially Curly).

Born in 2021 in Austria and diagnosed in 2022. Simon is very greedy. He loves books and making discoveries!

Born in 2019 in Mainz, Germany and diagnosed in 2022. Leon loves playing with cars and looking at books - preferably cars and books with sounds. He loves to eat. Leon has a healthy older sister, born in 2015.