2023-06-21 10:25:25
at MGF
In our country there are about six thousand people with amyotrophic lateral sclerosis, a rare neurodegenerative disease that paralyzes the muscles but leaves the mind clear
It is estimated that in our country there are about six thousand people suffering from amyotrophic lateral sclerosis (ALS), a rare neurodegenerative disease that mortifies the body but leaves the mind clear. The hope of the patients and their families in the research that goes on, so that effective treatments can be identified as soon as possible to defeat the terrible ALS. It is no coincidence that World Disease Day takes place on June 21, the day of the summer solstice and, hopefully, a symbol of rebirth.
The illness
Amyotrophic lateral sclerosis is a progressive disease that affects the motor neurons, causing the progressive loss of the ability to move, speak and breathe. It is a pathology with a high care complexity, which has a significant impact not only on the physical health but also on the emotional, psychological and social health of patients and their families.
Awareness and hope
This year the theme of the world campaign, chosen by the International Federation of Patient Associations which also includes Aisla (Italian Amyotrophic Lateral Sclerosis Association) for Italy, is awareness, to promote greater knowledge of the pathology, which means also mean breaking down the barriers of disinformation. From this point of view, the Aisla association, which has been active for forty years in support of the sick, also draws attention to the figure of the caregiver, the person who assists a relative who is not able to be autonomous in daily life.
Let’s celebrate the day with eyes of hope but also with awareness – says the president of Aisla, Fulvia Massimelli -. They are two feelings that, together, can be regenerative. In fact, together they can focus on scientific research – a beacon for our work – and on the responses to people’s needs, on the support necessary to improve the quality of life of our community.
Initiatives
Many initiatives have been promoted all over the world with the aim of telling and focusing on people and their stories, starting from the assumption that being fragile does not mean being weak and that barriers, especially cultural ones, can and must be overcome. This is why the official hashtag launched by the Alliance for the day #ALSMNDWithoutBorders or ALS without borders to underline that, only by joining forces and working together, can we hope for a future without ALS.
Numerous initiatives are also planned in Italy, thanks to the commitment of many volunteers, families and local realities, from conferences and moments of study to Thalas – Mare&Vento, the big hug, the sailing made possible by the volunteers of the Aisla Piombino section. Who information on the initiatives organized in the various regions.
June 21, 2023 (change June 21, 2023 | 10:25 am)
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