Research, aids, and therapies: what we know about the disease that struck Matteo Materazzi
Matteo Materazzi , brother of the famous world-class defender Marco and himself a football player and agent, suffers from ALS. His condition quickly worsened, so much so that he required assistance with simple daily activities, such as showering and getting into a car. The family has launched a fundraiser—with an ambitious goal of €1.5 million—to finance an experimental personalized therapy. But what are the conditions they face today, and what are the costs faced by those with ALS? And what hope can those affected place in research?
Materazzi stated that he spent €100,000 just to make his daily life more manageable . A few years ago, the Italian Amyotrophic Lateral Sclerosis Association (AISLA) – together with Bocconi – conducted a study, which found that the overall costs for caring for a person with intermediate-stage ALS are approximately €100,000 per year, rising to €150,000 in advanced stages . "Part of these expenses are covered by the National Health System and consequently by the Region," clarifies Stefania Bastianello, technical director of AISLA and head of the Listening and Training Center. "All standard aids are permitted. It's clear that if a person wants a truly sophisticated wheelchair, they have to make up the difference. All other devices, such as hoists, articulated beds, nutritional aids, and ventilators, are also covered by the Local Health Authority. It's important to clarify this."
The overall costs for caring for a person with ALS in the intermediate stage are around 100 thousand euros per year, which rises to 150 thousand in the advanced stage.
However, there remain costs that are borne by families, who often find themselves in difficulty precisely for this reason. These are primarily those relating to family assistants, which for a 24-hour presence are not low figures. "There are funds for non-self-sufficiency, but at the national level they vary greatly," Bastianello continues. "The contribution ranges from €2,400 in Piedmont to €600 in other places. This makes a substantial difference." Even with the new pricing structure for assistive devices, not everything is always smooth sailing. "As AISLA, we have received reports," says the director, "for example, that batteries—as well as spare parts for electric wheelchairs—were paid for by the user. The battery isn't just for mobility: it's also used to connect the communicator; it's an essential tool for social integration. In reality, there were misinterpretations by the individual local health authorities ." There was then a question, and Minister Schillaci reiterated that a circular would be issued to clarify the matter; We are all waiting for this document. But if there are any other problems, we will knock on the appropriate doors ."
What is the current state of research? The only recognized therapy currently available for all people with ALS is riluzole. In recent years, however, a very important discovery has been made for those with the SOD1 genetic mutation: a drug, Tofersen, has been developed, which has shown promising results in clinical trials. In Italy, as Aisla explains, an early access program has been active since 2021—compassionate use regulated by a ministerial decree—that allows neurologists to request Tofersen for patients with the SOD1 mutation, regardless of the stage of their disease, at no cost to the patients themselves . This means that anyone who is eligible can access this experimental therapy through early access, according to rigorous and regulated criteria.
Materazzi carries a genetic mutation other than the best-known SOD 1: the TDP-43 protein . In interviews, he has stated the need to raise funds to develop an ASO (antisense oligonucleotide), an ultra-personalized gene therapy. ASOs are short synthetic sequences of DNA or RNA designed to bind to specific RNAs and block the production of the corresponding protein. The problem is that ASOs reduce both the mutated, toxic protein and the normal protein. Tofersen, for example, is an ASO, and the data collected to date seem to show that reducing the normal protein along with the mutated one has no negative effects.
In the case of the Tdp-43 protein, the situation is more complex, as there is a real possibility that its indiscriminate reduction could be harmful. This requires "allele-specific" ASOs, designed specifically for each patient and capable of targeting only the mutated sequence without interfering with the healthy one. Some forms of ALS have a genetic component, and research in this field has a good chance of discovering effective therapies. It should be emphasized, however, that the usefulness of allele-specific ASOs has not yet been demonstrated.
Matteo Materazzi opens the "A Goal for Solidarity" match between Catania and the Stadio Massimino. La presse – Italia Eventi management
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