Lauriane Janssen and the Fondation 101 Génomes

2019 / Saturday, May 2nd, 2020

This article was published in n°61 of the quarterly newspaper "Le Coeur et la main" of the Belgian Association of Marfan Syndrome asbl.


Lauriane Janssen died on 21 November at the age of 33.

Lauriane was a brilliant Belgian researcher who pursued her career at the University of Oulu in Finland.

Lauriane had Marfan syndrome and was on the front line of the fight against this disease.

For the journal "Le Coeur et la main", she provided a quarterly review of scientific publications related to Marfan syndrome, which was eagerly awaited by specialists. She was a member of the Board of Directors of the Belgian Marfan Syndrome Association, President of the Marfan Europe Network and was an active contributor to the F101G's 101 Marfan Genomes project.

In number 56 of the newspaper "Le Coeur et la Main" she had the opportunity to explain why she considered this project to be " a major boost to Marfan Syndrome research. ".

Lauriane's involvement in the 101 Genomes Marfan Project began even before the creation of Fondation 101 Génomes. It is indeed with Lauriane's help that the article " Marfan Syndrome News : Tracks 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 "Le Coeur et la main" N°50.

It was this article that would later serve as the embryo for the White Paper from Fondation 101 Génomes to which Lauriane also contributed. It is this White Paper which convinced many partners to join the adventure and so Fondation 101 Génomes was born in November 2017.

In 2018, Lauriane was again with Lauriane to compose the scientific poster " The 101 Genomes Marfan Project of the Foundation 101 Genomes "It is with Lauriane that it was presented during the "poster sessions" for scientists at the 10Th International Symposium on Marfan Syndrome. Only one photo remains (taken by Professor Julie De Backer) of this hopeful moment we lived together. I really thought that we would experience many more.

From Finland, she followed all the work of the Scientific Committee and reviewed (and commented on) the minutes of its meetings. We regularly exchanged scientific articles about Marfan Syndrome. In particular, I remember her reaction when we reviewed together an article describing a Chinese experiment that successfully used a variant of CRISPR-Cas9 (CRISPR-Base Editor) to modify a pathogenic variant that triggers Marfan Syndrome in viable human embryos. This was the first time that such an experiment was conducted on viable human embryos (whose evolution was interrupted). Without mentioning the ethical aspects of the discussion, Lauriane feared the very principle of conducting such experiments when the interactions between genes were still so poorly understood. A few months later, we learned about the experiment conducted by Professor He Jiankui .

Lauriane argued that patients should help the scientists by providing medical data, information, presence, etc., to the scientists. But she felt that this was already a lot to ask of them and that they should not be asked for more in terms of investment. I understood her 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 it? She would say, "I don't know. You. You, the parents, the relatives, the friends, only you have the energy to lead this fight. ». These words of Lauriane acted as a revelation and resonated as an order of mission.

We met a few months ago in Norway for a meeting of the "European Union". 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 who went around the social networks. Before I left, we met for a few minutes to "debrief" the meeting. I told her again how much I admired her calm and patience she had had during the debates. She smiled at me. She told me that 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 that she was measuring every effort. I didn't know it was the last time we spoke in that hotel lobby in Drammen in front of a switched-off coffee machine.

There were still a few exchanges of WhatsApp emails and messages but I was completely surprised when I learned of his passing.

Lauriane's death is tragic. For parents and grandparents of children with Marfan syndrome, Lauriane's death is also a horrible reminder that the syndrome is not yet sufficiently well understood and that a huge investment is still needed to hope that one day we can begin to control it.

Today we have no choice but to hold on to the encouraging messages and enjoy every moment, but it is imperative to continue the fight! It is urgent for our children and we must act, we must move forward quickly.

Lauriane's rigour, intelligence, finesse, humanity and humour will be terribly missed by all those who knew her.

I extend my deepest condolences to Lauriane's family and loved ones.




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