Due to the severe weather conditions and the maximum alert situation in which the city of Faenza (Ravenna) and the territory of Emilia Romagna find themselves, the first of the three training events promoted by the Italian Lateral Sclerosis Association has been postponed to a date to be defined amyotrophic, which was scheduled for Friday 19 May. The event will be rescheduled for fall 2023, he informs Aisla. The training Open Day ‘To care not to cure’ – recalls a note – had the objective of involving, in addition to healthcare professionals, above all university students and those in their final years of high school to share reflections on the issue of quality of life in person with ALS and his family.
The appointment in Faenza, from which the national initiative was to start in the wake of the celebrations of Aisla’s 40 years of activity, had as its topic the technology allied to the person with disabilities, in their uniqueness and in their life path. With healthcare operators, on the other hand, the intention was to outline together new languages of the care relationship and to transfer tools that can allow us to face the complexity of care. Aisla, Nemo clinical centers and the association Insieme a te, available to offer support for any health emergencies of people with ALS ([email protected]), sent a notice to all participants, speakers and moderators tonight. “In thanking you for your willingness to participate – reads the notice – we are certain that in these hours the immediate feeling of solidarity, which belongs to our being a community, is the fraternal and courageous embrace that gathers around those who he is experiencing hours of pain, fear and need. This is combined with deep gratitude to all the forces of order who are at work to carry out the rescue operations”.
The meeting ‘End of life, a still open question’, scheduled for Thursday 25 May in Palermo, focuses on the right to health and human dignity at Palazzo Sant’Elia. At the center of the event, palliative care aimed at alleviating the physical, psychological and existential suffering of the person, as required by articles 2 and 32 of the Constitution and by law 38/2010. Aisla thanks Vivisol and the Ferranti Orthopedic Center for supporting the initiative. “The unpredictability of ALS is different from person to person and never univocal – underlines Daniela Cattaneo, Aisla palliative doctor – ALS is the paradigm of the complexity of care: a communication path is necessary between the treating team and the sick person because this have a time for knowledge, one for elaboration and one for choice”.
ALS is a disease that places the person in front of existential choices, a true paradigm of the complexity of care – points out Aisla – and for this the constant and continuous dialogue between the family and the multidisciplinary team is fundamental, the so-called Neuropalliative Care approach, where the doctor palliative care specialist has the skills to support families in dealing with complex situations such as destructive behavioral manifestations, frontotemporal dementia, withdrawal of informed consent and difficult symptomatological problems. The conference, under the High Patronage of the President of the Republic, is sponsored by the Sicilian Region, the Municipality of Palermo, the University of Palermo and the Sant’Elia Foundation.
Finally, sold out for the stage in Rome dedicated to the continuity between research and care. The appointment is for Tuesday 23 May in the Electra Room of the Gemelli Polyclinic. With the workshop ‘Criticalities in Als‘, the Nemo Clinical Centers open a table for work and discussion on clinical topics and the advancement of scientific research on the disease. Dedicated to professionals in the sector, the workshop will deal with the more complex subjects relating to the pathogenesis of the disease and the repercussions that this complexity has on the conduct of clinical trials and their therapeutic efficacy. Coordinated by Mario Sabatelli, clinical director of the adult area of Nemo Rome, and Federica Cerri, neurologist of the ALS area of Nemo Milan, the event enjoys the patronage of Aisla, together with the Catholic University of the Sacred Heart and the A. Gemelli University Hospital Foundation of Rome .
Since 2008 Aisla – concludes the note – has launched a specific training activity with the aim of giving a competent, structured and organic response to all those (formal and informal caregivers) who are involved in assisting people with ALS. Intended for both healthcare professionals (specialist doctors, general practitioners, nurses, therapists, psychologists, Oss) as well as family assistants and family caregivers in different care settings (hospitals, rehabilitation facilities, nursing homes, home care, hospices and palliative home care ), to date the training commitment includes 352 training modules.
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