This article was published in n°61 of the quarterly journal “Le Coeur et la main” of the Association Belge du Syndrome de Marfan asbl.
Lauriane Janssen died on November 21 at the age of 33.
Lauriane was a brilliant Belgian researcher with a career at the University of Oulu in Finland.
Lauriane suffered from Marfan syndrome and was at the forefront of the fight against this disease.
For the journal Le Cœur et la main , she produced a quarterly review of scientific publications on Marfan syndrome that was eagerly awaited by specialists. She was a board member of the Belgian Marfan Syndrome Association, President of the Marfan Europe Network and an active contributor to F101G’s 101 Marfan Genomes project.
In issue no. 56 of the magazine Le Cœur et la Main , she explained why she considered this project to be “a major step forward for the company”. a major boost for research into Marfan syndrome .
Lauriane’s involvement with the 101 Genomes Marfan Project began even before the creation of the 101 Genomes Foundation. With Lauriane’s help, the article ” Marfan Syndrome News : Avenues for new therapies, marfan registry and European funds | Inhibition of p38 and NOS2 proteins, identification of natural genetic variants ” was published in January 2017 in ” The Heart and Hand ” N°50.
It was this article that would later serve as the embryo for the 101 Genomes Foundation’s White Paper, to which Lauriane also contributed. It was this White Paper that convinced many partners to join the adventure, and so the 101 Genomes Foundation was born in November 2017.
In 2018, Lauriane was once again responsible for the scientific poster ” The 101 Genomes Marfan Project of the Foundation 101 Génomes ” on which she features prominently, and it was with Lauriane that it was presented at the ” posters sessions ” for scientists at the 10th International Symposium on Marfan Syndrome. All that remains is a photo (taken by Professor Julie De Backer) of this hopeful moment we shared together. I really thought we were going to experience a lot more.
From Finland, she followed all the work of the Scientific Committee, rereading (and commenting on) the minutes of its meetings. We regularly exchanged views on scientific articles about Marfan syndrome. I particularly remember his reaction when we reviewed together an article describing a Chinese experiment that had successfully used a CRISPR-Cas9 variant (CRISPR-Base Editor) to modify a pathogenic variant that triggers Marfan syndrome in viable human embryos. This was the first time an experiment of this type had been carried out on viable human embryos (whose evolution had been interrupted). Without evoking the ethical aspects of the discussion, Lauriane was apprehensive about the very principle of conducting such experiments when the interactions between genes were still so poorly understood. A few months later, we learned of Professor He Jiankui’s experiment…
Lauriane argued that patients should help scientists by providing medical data, information, presence and so on. But she felt that this was already asking a lot of them, and that they shouldn’t be asked to invest any more. I understood his point of view, but somebody had to do it. And who was going to do it then ? Who was going to fight for them ? Who would have the legitimacy to do so ? She answered : ” You. You, the parents, family and friends, are the only ones with the energy to fight this battle. “. Lauriane’s words were an eye-opener and sounded like a mission statement.
A few months ago, we met up again in Norway for a meeting of the ” Marfan European Network “, where she invited me to present our project to European associations. It was on this occasion that Colette (Dushka’s daughter) took the photo of Lauriane that has been doing the rounds on social networks. Before I left, we got together for a few minutes to “debrief” the meeting. I reiterated my admiration for her calm and patience during the debates. She smiled at me. She told me she couldn’t take it anymore, that she wanted it to go faster, that she was just as impatient as I was, but that she was tired and measuring her every effort. I didn’t know it was the last time we’d speak in this hotel lobby in Drammen in front of an unlit coffee machine.
There were still a few exchanges of emails and WhatsApp messages, but the surprise was total when I learned of his death.
Lauriane’s death is tragic. For parents and grandparents of children with Marfan syndrome, Lauriane’s death is also a horrible reminder of reality. The syndrome is not yet sufficiently well understood, and a huge investment is still needed if we are ever to master it.
Today, we have no choice but to hang on to the encouraging messages and make the most of every moment, but the fight must go on ! It’s urgent for our children and we must act, we must move forward quickly.
Lauriane’s rigor, intelligence, finesse, humanity and humor will be sorely missed by all who knew her.
My deepest condolences to Lauriane’s family and friends.
Romain
