“More funds are necessary for research on amyotrophic lateral sclerosis (ALS). More resources to aid more serious and controlled research for cures that slow the degenerating effects of the disease, for example using stem cells”, said Claudio Sabelli, an ALS patient and member of the Board of the ‘Viva la Vita’ society, writing with a visually controlled computer that communicates for him, commenting about announcements on research to fight ALS.
Sabelli said, “As a patient, I have an opinion that is not supported by facts for the simple reason that there are no new developments. I believe that a lot of financing goes towards weak and inconsistent research ideas. I fear that false expectations like the Igf1 or lithium tests are damaging. It is true that without pinpointing the causes that trigger ALS it is impossible to find an efficient remedy, but it’s also true that in the meantime remedies that slow down its degenerating effects can be found. I am referring to all stem cells, including embryonic stem cells.” He added, “It is pointless to continue with useless arguments: stem cells represent a concrete possibility to cure serious pathologies. Research has to enjoy maximum freedom and autonomy.”
But Sabelli’s warnings are not limited only to a lack of funding. He has also made accusations against the entire management of ALS research. “Few protocols come from the north, nothing from Rome, and in the south, ALS is a mystery. Just a coincidence, a wicked destiny, or a lethal union between meddling and politicians that understand scientific research as malevolent experimentalism? Here, research is non-existent. Parliament should not only be involved with regulations, but it should also create a center for stem cell research with specific resources. The excuse is the crisis, which is the same in every country, but is also hiding our serious incapability to make concrete steps towards a modern society in which scientific research is a crucial aspect.”
Viva la Vita president Mauro Pichezzi commented, “Claudio’s words are meaningful because they describe the condition of waiting that ALS patients live with. It is true that in Italy more funds are necessary for research; this is what all associations that make up the national ALS network are asking for. It is necessary to grant funding to serious research that goes in all directions, and is strictly controlled by the Health Minister and the Superior Institute of Health, guaranteeing patient safety in experiments.”