Florence, 28 June 2024 – La Lombardy follows the Tuscan example in neonatal screening for Metachromatic leukodystrophy. Guido De Barros, president of Voa Voa! Aps: “We are excited to announce that Lombardy has also started testing for neonatal screening for Metachromatic Leukodystrophy (MLD), following the example of Tuscany. This news is great satisfaction for the Voa Voa Association! Friends of Sofia Aps, which promoted and financed the Tuscan project together with the Foundation Meyer”. The Tuscan project, which began on March 13, 2023, is the first “non-profit” neonatal screening project for MLD in Italy and one of the first in the world. This initiative allows for the timely diagnosis of a rare and devastating disease, giving hope to many families. Although no cases have been diagnosed yet, the experimentation continues and will continue for another year and a half, with the aim of saving lives thanks to the transplant of genetically modified hematopoietic stem cells, developed by the San Raffaele-Telethon Institute for Gene Therapy. “The introduction of neonatal screening in Lombardy represents a further step forward towards more inclusive and advanced healthcare,” comments the president of Voa Voa Guido De Barros. “The Voa Voa! Amici di Sofia Association hopes that the example of Tuscany and Lombardy can spread to other Italian regions, so that MLD can be increasingly diagnosed early, studied and, above all, treated.” “The Association – continues De Barros – will continue to support and promote these projects, working so that every newborn can have the opportunity of a healthy and happy life. Each step forward represents a victory against MLD and other rare genetic diseases. We remind you that the Association still has to cover the costs of the second and third year of the Tuscan trial and that everyone can contribute financially through donations and the devolution of 5×1000 of the tax return, entering the tax code 94232020480.” The fundraising campaign “Gocce di Speranza”, promoted by the Association, continues to raise funds to support these vital projects. For more information and to make donations, visit the Gocce di Speranza website and our official website Voa Voa! Amici di Sofia. You can find the official press release of the Lombardy Region. Maurizio Costanzo
