Today technology can transform the home environment, e an “intelligent” home can be a fundamental tool to support the independence and autonomy of people experiencing severe disabilities, such as those caused by neuromuscular and neurodegenerative diseases. Yet, from a survey conducted by the multidisciplinary team of Nemo Lab and the Nemo Clinical Center on a sample of 46 adult respondents, of whom 23 with Spinal Muscular Atrophy (Sma), Amyotrophic Lateral Sclerosis (ALS), muscular dystrophies, and 23 caregivers , it emerges that more than half of the interviewees say they are not satisfied with the information received on the technologies useful for increasing their autonomy and 7 out of 10 ignore that some of these solutions are paid by the NHS, in the face of a great faith in environmental control technologies and the desire to use them more. A need from which the project was born “We inhabit new spaces of freedom”, presented today in Rome, promoted by Biogen and the Nemo Clinical Centers, in collaboration with Nemo Lab and under the patronage of Aisla (Italian Amyotrophic Lateral Sclerosis Association), Famiglie Sma (Parents Association for Research on Spinal Muscular Atrophy) and Uildm (Italian union against muscular dystrophy).
At the heart of the project is the publication of the forward paper, which brings together the voices of experts from the clinical and academic world, together with those from the community of people with neuromuscular diseases, institutions and industry. Together with the minister, the institutions present gathered the recommendations expressed in the document and undertook to act in the competent bodies to favor the implementation and simplification of access to technologies and environmental control systems. A technology, therefore, allied for the realization of the person’s independent life project, the cornerstone of the recent framework law on disability.
“Those who experience a neuromuscular pathology come to terms with physical limits every day and with the need to be supported even in the smallest daily gestures – he says Alberto Fontana, president of Nemo Clinical Centers -. In this sense, technology represents a fundamental tool in the search for the path of personal autonomy and the desire to live a full life, regardless of the disease. The 2006 UN convention for people with disabilities underlines how much it is the environment in which one lives that determines disability. This is why we must continue to work to create the conditions that modify living environments, to build a new image of society, in which the specificities of each become a value for all”.
The qualitative survey investigated not only the need, but also the awareness of the possibilities offered by technologies and the knowledge, in some ways still scarce, of the opportunities provided by the National Health Service.
“The theme of complexity is what characterizes the clinical experience of those experiencing a neuromuscular pathology, as a progressive disease of a systemic nature – he declares Valeria Samson, clinical and scientific director of the NeMO Clinical Center in Milan and full professor at the University of Milan -. And if it is true that in recent years scientific research has been making enormous strides in experimenting with pharmacological treatments that are changing the very history of some of these pathologies, it is of fundamental importance to maintain targeted clinical management, also of a technological nature, through which to accompany and educate the person in the choice and use of the devices and systems appropriate to his specific needs”.
“As a pioneer in the neurosciences, for over 40 years Biogen has been dedicated to scientific research, to advance the knowledge of complex neurological diseases and find new therapeutic solutions – explains Joseph Banfi, Chief Executive Officer of Biogen Italy -. But scientific innovation alone is not enough. Responding to the needs of those facing serious neurological and neurodegenerative diseases requires a broad approach, which embraces all the multiple components of care and calls for a collective and multidisciplinary commitment”. The “Let’s live in new spaces of freedom” project is an example of collaboration and dialogue and I hope it can be the first step towards a future in which the smart home is an accessible reality to support the autonomy of people with disabilities” she concludes .
#Technology #service #ALS #Sma #patients #experts #compared