Organiser: Miquel Valls Foundation.
Collaborating organisation: Ramon Molinas Foundation.
Implementation dates: 01/01/2020 – 31/12/2020.
The Miquel Valls Foundation Assistive Technology Resource Bank, more than 1,600 technological resources designed to improve quality of life and personal autonomy of people affected by Amyotrophic Lateral Sclerosis and other motor neurone diseases
The Ramon Molinas Foundation is collaborating with the Miquel Valls Foundation with the objective of improving the quality of life and promoting the personal autonomy of people affected by Amyotrophic Lateral Sclerosis and other motor neurone diseases (ALS/MND) and their families. The alliance between the two organisations will provide additional pieces of equipment to the Miquel Valls Foundation Assistive Technology Resource Bank.
The Miquel Valls Foundation Assistive Technology Resource Bank was created in 2007 and is available to everyone affected by ALS/MND that is helped by the foundation in Catalonia. The bank contains more than 1,600 technological resources designed to help users become more independent in their daily life. The service helps 250 families every year out of the 300 that fall under the umbrella of the foundation, and is managed through the Occupational Therapy Home Care Program.
The Occupational Therapists at the Miquel Valls Foundation visit the people affected by ELA/MND and their caregivers with the aim of identifying day-to-day needs and limitations. Firstly, they talk to and advise families about the assistive technology available to help with activities such as cleanliness, eating, mobility, communication and transport, and about accessibility solutions that can make the house safer and more comfortable. The occupational therapy team also trains people on how to utilise the technological resources provided and help to install them in their homes. The team then conducts a periodic review of the people using the Assistive Technology Resource Bank, alongside monitoring the progress of the disease, to identify any new needs.
The collaboration between the Miquel Valls Foundation and the Ramon Molinas Foundation will provide four batteries for electric wheelchairs, five batteries to convert manual wheelchairs to electric ones, two batteries for folding electric wheelchairs, six adaptable side tables, three alterative Grid 3 communication programmes, eight eye tracking software computer programmes, and eight alarm systems.
ALS, a neurodegenerative disease that affects the motor neurons of the brain, the brainstem and the spinal cord
Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s disease, is a neurodegenerative disease that affects the motor neurons of the brain, the brainstem, and the spinal cord, which are the cells responsible for sending messages from the brain to the muscles. Currently there is no cure for ALS, and no treatment exists that can stop the degenerative process. However, comprehensive care can improve the quality of life and reduce the decline in daily functioning caused by the disease.
The degeneration of motor neurons causes the brain to lose the ability to initiate and control muscle movement. As a consequence, patients suffer from muscular atrophy that progresses into paralysis. Aside from muscular movements, speech, swallowing and breathing can also be affected. However, in the majority of cases, the person’s cognitive capacity and the five senses are undamaged.
ALS is typically diagnosed in people between the ages of 40 and 70 years old. It can affect a wide range of ages, but is more common in men. Considered a rare disease, it is estimated to affect between 4 to 6 in 100,000 people, and that there are between 1 and 3 new cases per year in every 100,000 people. The disease, which carries a life expectancy of between 2 to 5 years, affects roughly 400 people in Catalonia, 4,000 in Spain, and 350,000 people worldwide.
The Miquel Valls Foundation is the only non-profit organisation that cares for people with ALS and other motor neurone diseases in Catalonia
The mission of the Miquel Valls Foundation is to improve the quality of life of people affected by ALS and other motor neurone diseases and offer support to their families. Created in 2005 and located in Calella (Barcelona), it is the only non-profit organisation that provides comprehensive, personalised and specialised care for people that have been diagnosed with neurogenerative diseases.
With the aim of improving health and social care, the organisation is working alongside the Motor Neuron Unit at the Bellvitge Hospital, the Amyotrophic Lateral Sclerosis Unit at Santa Creu i Sant Pau Hospital and the Multidisciplinary ALS/MND Unit at Hospital del Mar. The Miquel Valls Foundation also carries out psychosocial research and collaborates, promotes, and supports clinical trials investigating these diseases.
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