Medicine : University of Louvain, Belgium
Paediatrics : University of Brussels, Belgium
Child Neurology : University of Liège, Belgium
PhD : In vivo electrophysiology University of Brussels, Belgium
Accreditation to direct research (HDR) : Paris VI, France
Career summary
I am a physician taking care of children with rare and severe conditions- mostly neuromuscular diseases. Taking care for me means not only to diagnose and to follow them in the clinic- but also to participate in conducting efficient and well-designed trial. It also means prevention.
I was trained as a medical doctor then as a paediatrician in Belgium- then as a child neurologist in Paris (Robert Debré). I met Thomas Voit in 2008 as he was looking for a child neurologist with a PhD to develop clinical research in neuromuscular diseases. When I disclosed him that I knew nothing about any of these topics, he told me I am the person he was looking for. I worked for 11 years in Paris, first in the Institute of Myology, then in I-Motion, which I co-created in 2015. Throughout that period, I continued to work in Liège, my dear hometown in Belgium where I developed the neuromuscular centre. I moved to Oxford just before Brexit and Covid, which may demonstrate my absence of common sense. I have happily worked and liveed there since then, and I continue working one week per month in Liège, which allows me to bring back Belgian chocolates and beers to the UK- both are key to my mental health. I am passionate about innovative outcome measures and about newborn screening
What is the personal or professional achievement you’re most proud of?
1. My two kids.
2. The SMA then the genomic newborn screening project in Southern Belgium. I feel that prevention is an important leverage to treatment
3.The development and qualification of the first digital outcome measure, the SV95C
4. The international collaboration with amazing colleagues in Egypt, Romania and Ukraine for instance
5. The fact that I feel people in my teams are quite happy and moving forward in their scientific career
Why did you first join the WMS?
In 2009, it was in Geneva. To go to the WMS was just normal at that time for people working at the Institute of Myology. I felt like a kid in a candy store, and I rapidly understood it would be the-congress-that-I-will-attend-every-year-whatever. And so I did.
What is your goal in joining the Executive Board?
I was elected in 2019 as a member of the Executive Board, then as the Secretary of the WMS. At that time, I simply wanted the WMS to change. I had attended several meetings, it was by far my favourite Congress, but I wanted to contribute to make the WMS more sustainable, more open, more friendly to young researchers and to colleagues working in places of the world with fewer resources. I think that with the Board, and with Volker Straub and Gisele Bonne, we have been quite successfull in achieving a soft transition of our dear old WMS into a more modern and open Society. I wish to continue to work on this transition and to continue to contribute to make WMS a place where we are exposed to outstanding science, but also a place where we all feel safe and promoted where we all can learn and progress.
I wish to put a special emphasis on mentorship. For instance, to give young researchers the opportunity to get sincere senior opinions and advice on their abstracts, their posters or their presentations; to provide the opportunity for teams who have data of interest but are not trained to present it using the code of international publication to get the support of more experienced teams. A concrete example of this is the Ukrainian experience of Newborn screening. Data were collected in Ukraine by Ukrainian doctors and scientists, and with some support from our team were able to generate two research letters in the Lancet and Lancet Regional Health, and a brilliant presentation at the WMS Congress that obtained the Lea Roze prize. Mentorship can be developed in several other ways, and I believe it will contribute to the promotion and to the development of each of us, and to the emergence of important set of data that we do not have access to because they do not reach international journals or congresses.
I mostly see the WMS as a large international community that embraces a huge variety of interests, roles, countries and more importantly, human beings sharing a common objective, which is improving the life of humans living with a neuromuscular condition. I wish the new board to develop this community spirit, and to continue making the Congress the place where we are all invited and supported to deliver and to listen to outstanding science.
