“The recognition of the Tofersen drug by the US Food and Drug Administration (FDA) is recent. For the first time, an effective drug for amyotrophic lateral sclerosis has been approved. It is not a coincidence, but a unity of purpose of the scientific community, of the patient community to achieve apparently complicated objectives. We are now at a turning point. It is the first molecule capable of slowing down the disease in 2% of patients with ALS: a first step, a first crack in the wall of ALS which , due to its complexity, seemed insurmountable. It’s really a good moment, it’s nice to rejoice in this result with the patient community “. So Mario Sabatelli, director of the Nemo Policlinico Gemelli Center in Rome and president of the Aisla Scientific Commission, during the ‘Convention Aisla 40’ to celebrate the 40th birthday of the Italian Lateral Sclerosis Association.
On the occasion of the event – which includes a rich program of conferences and events at the Blue Village of Novarello (Novara), the Piedmontese city where the association’s activity began – Sabatelli underlines that “research and assistance have been and are the pillars of Aisla. For us researchers who study the disease, assist patients, having a reality like Aisla by our side is fundamental because resignation, great difficulties can sometimes be obstacles. Having this smiling community, and today we smile, is also a strength for us researchers”.
Caring for ALS patients “is difficult and complex – the expert points out – the disease takes away your movement, speech, breathing, as well as the ability to swallow. Assistance is therefore a central moment in which Aisla has been committed for a long time, even in the trivially bureaucratic aspects, including having adequate financial support with the accompanying allowance. Today we are also rejoicing for another milestone achieved: the Inps has issued the new guidelines and this will finally facilitate even that bureaucratic burden which represented a further element of loss for our patients. It’s really a good time and we continue on this path “.
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