The non-profit association "Syndrome de Marfan Luxembourg den-i.lu asbl" recently celebrated its 10th anniversary with an academic meeting at the Parc Hotel Alvisse. After a welcome address by President Denis Garzaro, renowned heart surgeon and Marfan specialist Professor Dr. Klaus Kallenbach opened the celebrations with an interesting and informative lecture.
Professor Kallenbach, who works at the Institut national de chirurgie cardiaque et cardiologie interventionnelle (INCCI), presented the latest findings in the cardiac surgical treatment of Marfan syndrome in a language understandable to a wide audience.
Ludivine Verboogen and Romain Alderweireldt, who had traveled from Brussels, reported on the work of their foundation, the "101 Genomes Foundation". When their third child was born with Marfan syndrome in 2015, the two lawyers decided to advance research into the syndrome. To this end, they founded the "101 Genomes Foundation" and established a genomic biobank in the cloud that contains the complete genome data of people with rare diseases and control subjects. Since 2017, they have been working with renowned scientists, patient associations, generous donors, lawyers and engineers to incorporate the newly gained knowledge into possible therapeutic approaches.
Among the interested audience were Françoise Steinbach from the Marfan Europe Network, Douchka Peyra, President of the Belgian Marfan Society, Stéphanie Delaunay, President of the French Marfan Society, as well as Renée Welter and Dan Leiner, who initiated the idea of founding a non-profit Marfan association over 10 years ago.
After the successful specialist conference, the members of the Board of Directors invited all guests to a celebratory drink. The highlight of the birthday celebration was an impressive retrospective of the 10 successful years of the "Syndrom de Marfan Luxembourg den-i.lu asbl", presented by Roger Seimetz with a mixture of seriousness, dramaturgy and sensitive humor. Paulo Simoes and Julien Arpetti provided the musical backdrop.
The Lions Club Mameranus, represented by Gérard Louis, member of the Social Commission, contributed € 3,600 to the various costs of this anniversary.
Strengthened and motivated, the organization will continue to focus on its main objectives in the future: Information, raising public awareness, supporting those affected and promoting research