Dear European Friends,
2 weeks ago, we unfortunately had to report that Lauriane Janssen, the Chair of the Marfan Europe Network, passed away very unexpectedly. She was 33 years old. For those who were attending the biennial M.E.N meeting in Norway in September, the news was a great shock. When we said goodbye on September 22nd, we did not expect it to be a definitive farewell… Lauriane had brilliantly lead this meeting and we shall keep wonderful memories of her.
Lauriane was a beautiful person: she was smart and inspiring. She was also very dedicated to the Marfan cause, as a member of the Board in the Belgian patient organisation and as Chair of the Marfan Europe Network. She had Marfan syndrome herself and as a scientist, she would fight for every research project aimed at a better understanding of it, which could lead to find a cure or a way to help Marfan patients.
We are all in deep mourning: not only because we lost our Chair, but because we lost a friend. The MEN coordination Committee present their most sincere condolences to Lauriane’s family, to her friends, to her colleagues at work and to the Board of the ABSM.
We have decided, in the name of the Marfan Europe Network, to make a donation to the project 101G in memory of Lauriane, who supported this private and ambitious initiative since the beginning.
We would like to inform our members that “the show must go on”. Lauriane would have been the first to push us to go on… That is why, Karin Olsson, our Co-Chair, from the Swedish Marfan patient organization, is willing to take over the lead of the coordinating committee until 2021 and a new election. Our team (Karin Olsson, Jeroen Ipenburg, Tuija Ekegren, Françoise Steinbach) will continue to work closely together on the various projects that were discussed during the latest meeting in Drammen in September. We rely on your support and feedback to help us achieve what the mission of MEN is, sharing information and good practice for the benefit of the whole European Marfan community.
We wish you all a very nice and peaceful Christmas. Take care of yourselves, of your families, your friends and your beloved ones.
TOGETHER WE ARE STRONGER…. TOGETHER WE CAN!