UILDM is the only association for Muscular Dystrophy and Neuromuscular Diseases, covering all aspects and working daily to improve the quality of life of people affected by these diseases, welcoming and supporting their families, providing services and advice, and constantly organising activities and initiatives “for” and “with” people with disabilities.
The choice of the Association to reaffirm its full commitment and attention towards social, healthcare, cultural and scientific activities – as well as to institutional, representative and associative activities – is aimed at pursuing an integral approach to neuromuscular diseases, which combines culture, habits, thinking and action skills, in addition to striving for excellence in all areas, especially from a scientific point of view.
Pietro Moros, a famous writer from Genoa, has written a delightful fairy tale dedicated to children and families who experience the problem of motor disability caused by such diseases on a daily basis.
As the volunteers of UILDM explain,
‘The idea of creating an illustrated fairy tale to make the issue of rare diseases more widely known is the result of the more than 45 years of experience of the UILDM association in building a relationship with its patients, young and old, and their families, in an effort to offer as many answers and tools as possible to their needs, desires and rights. Among other things, the opportunity to experience their personal, social and school relationships in a peaceful, open way, without prejudice or fear from others. In order to do this, it is essential to raise awareness and promote greater knowledge of these diseases, especially because they are rare. We hope that the desire to play with imagination and the magic of a playful but educational tale, such as “The special children’s wizard”, will help adults and children learn about neuromuscular diseases and, especially, promote acceptance among those affected, to ensure that the importance of respecting the value of diversity in all its forms is understood.’
Schesir, which always stands on the side of the weakest, is contributing to the implementation of this project, which will soon be presented at the schools in Genoa. The project will consist of a kind of educational laboratory to deal with the issue of “disability and diversity” and that of scientific research, in particular with regard to researchers dealing with rare genetic diseases, DNA study and hereditary diseases.