On the occasion of the Day for Neuromuscular Diseases, which was celebrated Saturday 13 March in 16 Italian cities, “SMAnia di gusto”, an initiative that is part of the wider one, has started Soft Food project: the pleasure of eating just a click away!
Designed by Paladini Onlus Foundation, born in 2008 to improve the quality of life of people suffering from neuromuscular diseases, the initiative is supported by Biogen, a leading company in neuroscience, with the patronage of the main Patient Associations, including ASAMSI – Association for the study of infantile spinal muscular atrophies, FSMA – SMA families e UILDM – Italian Union for the fight against muscular dystrophy, precisely through the “SMAnia di gusto” initiative.
The goal is to support people with neuromuscular diseases who live daily with swallowing problems, helping them to feel included in a moment full of conviviality such as that of meals. For them, a professional chef has created a series of video-tutorials and video-recipes designed both for people suffering from pathologies that prevent correct swallowing, including Spinal Muscular Atrophy (SMA), and for people who they take care of them on a daily basis, the so-called caregivers, who will thus have an additional tool at their disposal to prepare and propose good, balanced and “dysphagia-friendly” dishes.
“Dysphagia is a condition characterized by difficulty in swallowing solid and liquid foods “ – explains Dr. Michela Coccia, coordinator of the integrated center for neuromuscular diseases of the University Hospital of Ospedali Riuniti of Ancona, who contributed to the design and implementation of the project – “It is very common in SMA and can occur in both children and adults with varying degrees of severity. Correct management of this problem – often the responsibility of caregivers – is essential to ensure the right supply of nutrients and correct hydration at any age, but also to take care of the emotional aspects related to the pleasure and conviviality of food “.
“We are happy to sponsor the ‘SMAnia di gusto’ project which takes into consideration a very important aspect in the treatment of neuromuscular diseases, such as nutrition, and does so by giving a concrete solution to a concrete problem that impacts the life of everyday“- he comments Valentina Baldini, President of Asamsi.
“Nutrition is care, it is sociability, it is a relationship whether it is a newborn, a child or an adult” adds Anita Pallara, President of SMA Families – “this is why we support this initiative that puts people living with highly disabling diseases such as SMA and their 360 ° needs at the center of attention. It is crucial to let people know that there are needs that go beyond therapies, albeit very important, and to find concrete solutions ”.
The video tutorials will allow you to have step by step all the instructions for the preparation of the different recipes, suitable for both children and adults, balanced from a nutritional point of view, designed thinking of textures suitable for those with swallowing problems, also excellent from the point of view in view of taste and palatability.
“Dysphagia can cause real relational discomforts with consequences in the emotional and social spheres. This is why we strongly and strongly support this project which makes available to patients, but also to those who take care of them, a concrete tool to improve their quality of life – he concludes Marco Rasconi, National President of UILDM.
“With the creation of this project we want once again to be close to those who live with neuromuscular diseases such as SMA, but also to their caregivers, who often find themselves having to face the difficulties related to nutrition.“- comments Giuseppe Banfi, CEO of Biogen Italia -“We are well aware of the importance of the multidisciplinary approach in the management of many neurological diseases and that is why we have decided to support “SMAnia di gusto ”in the context ofThe Soft Food initiative, which goes in the direction of being close to people with neuromuscular pathologies, in a moment like that of the meal, particularly charged with meaning, not only from a clinical point of view, but also and above all psychological”.