"Donnenmd" is a project promoted by the pediatric area of the NeMO Center in Rome, in collaboration with the Agostino Gemelli University Hospital Foundation IRCCS with the aim of providing training and information on some neuromuscular pathologies with childhood onset and to enhance the experiences of affected and caregivers women.
Rome, 23 June 2020 - The NeMO Clinical Center in Rome, pediatric area, in collaboration with the Agostino Gemelli University Hospital Foundation IRCCS, promotes a “women” project: it is called "Donnenmd" and is aimed at women with childhood-onset neuromuscular pathologies and to the caregivers of people who live with these diseases, but also to citizenship with the aim of informing and sharing testimonies and experiences.
Specifically, the information path will focus on spinal muscular atrophy (SMA), Duchenne muscular dystrophy (DMD) and Becker muscular dystrophy (DMB). A woman born with a disease like SMA will have to face the different stages of her life and its changes in the presence of a complex disease. A mother, or a caregiver of a person who lives with a disease such as SMA, the Duchenne and Becker dystrophies, will have to learn how to manage day by day the aspects related to her sick lover. Prof. Eugenio Mercuri, director of the women's, children's and public health department of the Agostino Gemelli University Hospital Foundation IRCCS and scientific director of the NeMO Clinical Center of Rome, pediatric area, declares: “Every day we meet amazing women, who in the their life, in different ways, they relate with childhood-onset neuromuscular disorders: girls, teenagers, young women, caregivers. The management of this type of pathology requires a lot of training: a woman who is informed of the implications that the disease, how it progresses, is more aware and with more resources in facing the way of taking care of herself or of her lover". "Taking care of every child, young woman or mother who lives the experience of a neuromuscular disease, firsthand or alongside their family, means supporting them in peacefully facing every choice - declares Alberto Fontana, president of the NeMO Clinical Centers - and the "Donnenmd" project is an opportunity to meet the wonderful world of each of them and a precious opportunity to share their extraordinary life stories ".
The project was presented on June 25 during an ANSA Forum broadcast on the www.ansa.it website and on the ANSA Facebook profile.
The "Donnenmd" project is realized thanks to the unconditional contribution of Avexis, Biogen, Roche, Sarepta and Italfarmaco.
On the website https://donnenmd.it/Italfarmaco/ dedicated to the project, you can listen to the interview with Dr. Sara Cazzaniga, Clinical R&D Manager in Italfarmaco, who declares: “We have decided to support this project because we believe in the caregiver figure in these pathologies. We primarily consider the mother as the central figure for the management of these patients and we also think that a caregiver with more knowledge on the pathology can deal with her role in a more conscious and competent way and will be able to face with courage the caregiving intervention".