Tuesday , October 4 2022

"Traveling with Luca," from Sunday, 18 gathering funds for the parent program



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In_viaggio_con_Luca

"Traveling with Luke", promoted by the Onlus parental program, the association of patients and parents with children suffering from Duchenne and Becker's muscular dystrophy, a serious rare genetic disease that has not yet healed, is the national campaign supporting a project for physiotherapy for children and adolescents with Duchenne and Becker muscular dystrophy from 18 November to 2 December. Revenue from the initiative will support the project "Training and physiotherapy for Duchenne and Becker muscular dystrophy patients and their families".

HOW TO GET By sending an SMS to 45594, on these dates will be possible to donate 2 euros from the mobile phones Wind Tre, TIM, Vodafone, PosteMobile, Iliad, CoopVoce and Tiscali. by calling the same number from TWT, Convergenze and PosteMobile, you can choose to donate 5 euros. from TIM, Wind Tre, Fastweb, Vodafone and Tiscali, it will be possible to donate 5 or 10 euros.

The coordinating centers of the project will be the network of NeMO (Neuromuscular Omnicentre) clinical centers, Rome's office, Polyclinic A. Gemelli, Messina, G. Martino Policlinico and Milan, Niguarda Ca & 39; Granda and the Department of Anesthesia and Pediatric Resuscitation of the National Hospital Company SS. Antonio and Biagio and C. Arrigo of Alessandria. The project will also look at the collaboration of the Italian Association of Physiotherapists (AIFI).

MUSIC DIFFICULT DISTORTION (DMD) It is the most severe form of muscular dystrophy, manifested in early childhood and causes progressive muscle degeneration, leading, during puberty, to an increasingly serious state of disability. Becker's muscular dystrophy (BMD) is a milder variant, the course of which varies from patient to patient. There is currently no cure for Duchenne and Becker muscular dystrophy, but progress in research and interdisciplinary care has doubled life expectancy and exceeded the third decade. It is therefore necessary to ensure that children follow the correct rehabilitation procedures in order to slow the course of the disease and have a better quality of life.

SPORTS WITH LOUKA Its aim is to develop a training and counseling program for the Duchenne and Becker specialists for the families of the association in order to be informed about the correct handling and proper use of the devices.

The main vehicle of the campaign is Luke's 27-year-old Luka, who lives with Duchenne muscular dystrophy and who made his first trip independently between the fascinating scenery of Norway and his best friend and brother. An episode that comes from reality and turns into storytelling, telling a basic experience of discovery and independence. The heart of the place will be the parallel proposed between Luca's journey and the progress of research and clinical management, which is fundamental to delivering a present and a future of quality to all children and young people living with pathology.

At the same time, in a further direction, the campaign intends to strengthen the issue of quality of life: every young adult with disabilities should have the tools and opportunities to be an active protagonist of everyday life and to plan his / her own future. "Traveling with Luke" has received the auspices of the National Youth Organization. The Project onlus parent is an association of patients and parents with children with muscular dystrophy by Duchenne and Becker. Since 1996, she has been working to improve the treatment, quality of life and long-term prospects of children and young people through research, education, training and awareness-raising. The main goals that have made the cluster to date are to support and support the families of children living with these diseases through a network of listening centers, to promote and fund scientific research on this issue and to develop a collaborative network to share and to disseminate basic information.

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