(Adnkronos) - Taglia il traguardo dei 40 anni AISLA – Associazione italiana sclerosi laterale amiotrofica “Con l’approvazione della nuova terapia Tofersen siamo a una svolta per i malati – dichiara Mario Sabatelli, Direttore Clinico NeMO Roma e Pres. Comm. Scientifica AISLA – Siamo felici perché rappresenta un primo passo per abbattere questo muro della SLA, che sembrava insormontabile”.
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00:00 40 years of AISLA, a nice coincidence with what happened a few days ago.
00:05 The FDA approves for the first time an effective drug in the SLAA.
00:12 A coincidence, no? It is a unity of intentions of the scientific community,
00:17 of the community of the sick to achieve apparently complicated goals.
00:22 But we are on a turning point. We are happy about this.
00:25 We are happy because even if this therapy, Tofersen,
00:30 which is the first molecule able to slow down, not in all,
00:34 there is still a lot to study.
00:36 The disease in this 2% of people with SLAA is the first step.
00:41 It is like every time it breaks, a crack is created in this wall
00:47 that seemed insurmountable of the complexity of the SLAA,
00:50 the hope that everything will collapse.
00:52 So the hope is that it continues, but this is not just a vague hope.
00:57 When the first events happen, as usual, the others come almost as a consequence.
01:02 It is a good moment and it is nice to enjoy this together with the community of the sick.
01:08 Research and assistance have been the main themes of AISLA.
01:12 For us researchers, for us who study the disease and assist the sick,
01:17 having an association like SLAA is fundamental.
01:21 Because the resignation, the great difficulties, sometimes can be a break.
01:27 Having this smiling community, here we smile today,
01:32 is a strength also for us researchers, not only for the sick themselves.
01:39 And assistance is a disease that you know, the difficult and complex SLAA.
01:44 It takes away the movement, the word, the breath, the ability to speak, to swallow.
01:50 Assistance is a central moment on this AISLA, if it is committed in the long run.
01:54 Even in the banal aspects, let's say, bureaucratic,
01:59 the difficulty of these people to have adequate economic support with the indemnity of accompaniment.
02:07 There is also this today.
02:09 We have arrived at the fact that the IMSS has emanated new guidelines
02:13 and this will finally facilitate that bureaucratic burden
02:19 that represents a further element of relief for our patients.
02:24 It is a good time, let's go on.
02:26 We need to be strong and, how to say, joy, strangely, seems a paradox.
02:33 Joy reigns in this day.