(Adnkronos) - “Due anni fa la ricerca ha vissuto una vera e propria svolta: si è riusciti, su una piccola percentuale di pazienti, a fermare la Sla con mutazione Sod-1. Ci sono ancora tante cose da capire sulla terapia con tofersen”, che agisce solo sulla mutazione Sod-1, “ma ora sappiamo che è possibile cercare nuove vie per fermare la malattia”. Lo ha dichiarato il direttore clinico Nemo Roma, Mario Sabatelli, durante l’evento streaming organizzato da Aisla, l’Associazione italiana Sclerosi laterale amiotrofica, "Una promessa per la ricerca". Un evento che vuole promuovere la responsabilità e l’impegno nella lotta alla Sla e che lancia la campagna di raccolta fondi natalizia a sostegno della Ricerca scientifica.
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00:00The SLA is a complicated disease. It doesn't allow you to move your arms and legs, it makes you unable to speak, to swallow and not to breathe.
00:13It seems clear that the care is extremely complex.
00:18A revolutionary idea was that of Alberto Fontana, who years ago thought that for people of this type there is a need for a complexity of assistance.
00:29Simple but revolutionary.
00:31That's why I went to the NEMO centers.
00:33NEMO is a thought rather than a place.
00:37It is a way to deal with this complexity.
00:40We do it and we hope that this model will spread nationally.
00:45Because you can't think with traditional systems, as we have done so far, to manage this complexity.
00:52On the part of research, two years ago there was a real turning point.
00:58The SLA is a rapidly progressive disease.
01:02For the first time, it was possible, in this small percentage of people with SLA who have a sub-immune mutation, to stop the disease.
01:11There are still many things to understand about this therapy, which is the Topfersel, which acts only on people who have this mutation.
01:20But the scope is phenomenal.
01:23Before, we hoped to stop the SLA, which is a terrible disease.
01:28Now we know that it is possible.
01:30So it is possible to look for new ways.
01:34And these new ways are now based, for the first time, on scientific knowledge.
01:39The level is growing month by month.
01:42There is no week without new acquisitions.
01:45The moment will come when this acquisition of topics will lead to a new therapy.
01:51I believe in it, but not with a generic hope.
01:54I believe in it because knowledge is increasing to such a level that this will happen sooner or later.