Who we are

“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

Responsible for Research

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

Researcher in the pharmaceutical industry (Austria)

Responsible for Research

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)

Our MECP2 children

Born in 2016 in France and diagnosed in 2019. Jean is passionate about large motorized vehicles (tractors, trucks ...), 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 to play with cars, look at books and perform his creative dance moves to music. Aleix is an energetic social boy who loves to be surrounded by people.

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

Born in 2018 in Austria. He was diagnosed in 2021. Matteo likes eating and listening to music. He likes to play with cars, trains and looking at books.

Born in 2018 in France and diagnosed in 2019. Pierre likes toys that make music and lights. He likes looking at books and eating.

Born in 2021 in Austria and diagnosed in 2022. Simon is a big eater. He loves books and discovering new things.

Born in 2019 in Mainz (Germany) and diagnosed in 2022, Leon likes to play with cars and look at books - preferably cars and books with sounds. He loves to eat. Leon has a healthy big sister who was born in 2015.

Born in 2007 in Austria. Lukas likes to go to the teen disco and be around nice people.

Born in 2018 in France.

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

Our history

11.2022

Creation of the interface DupMECP2

The multilingual plateform DupMECP2.eu was launched by our association to gather and provide up-to-date international information about the syndrome and advances on research.

08.2022

Foundation of the association

In August 2022, David and Caroline Covini, parents of a boy with MECP2 duplication syndrome founded the Austrian association "Lasst uns MDS heilen" (in English: “Let's cure MDS").

They fought to obtain the diagnosis of their son and, through the association, want to unite and support children with MDS but also all those with rare diseases.