“I never told the truth: I finished acting because I had retinitis pigmentosa”. Words of Totò Cascio, the child the unforgettable child starring alongside Philippe Noiret in “Nuovo Cinema Paradiso” by Giuseppe Tornatore, a film that won the Academy Award in 1990. Thus begins the trailer for the short film ‘A Occhi Aperti’ in which the actor talks about his ‘encounter’ with this rare genetic disease that threatens to make him lose his sight and that affects about a person out of three thousand. The short film will be broadcast on Rai1 and will be available on RaiPlay from 12 December.
Retinitis pigmentosa, what is the disease from which Totò Cascio suffers
by Irma D’Aria
Totò tells what it means to lose sight
The incredible story of Totò Cascio was told in the short film directed by Mauro Mancini and produced by Movimento Film with Rai Cinema for the Telethon Foundation. It was shot in the same places where the Oscar-winning film was shot thirty-three years ago, thus creating a game of visual and emotional cross-references with Tornatore’s work. And it is precisely “Totò” who in the short film tells us about his condition in the first person, what it means to lose his sight and find himself in an emotional labyrinth from which he tries to get out with all his strength. “At the age of 12 I discovered that I suffered from this disease and I spent difficult years, in which I closed in on myself. What I see in front of me is a dazzling light: I currently have retinitis pigmentosa with macular edema. It is indeed a condition. very disabling, but I am quite independent. I have learned to appreciate life for what it gives me “, says Totò. What would you say to someone who has just received a diagnosis of retinitis pigmentosa? “To believe in the research that goes on and that sooner or later it will find a cure, but in the meantime we just have to accept the disease and move on”.
The commitment of the Telethon Foundation
“The story of Totò Cascio, told through this beautiful short film and the emotion that transpires from his words, makes the reason that gives substance to our mission even more evident: to give a concrete answer in terms of treatments and therapies to those who live with a rare genetic disease and their families. Telethon Foundation has always been involved in scientific research on hereditary vision diseases with significant investments that have allowed us to finance research projects that have led to innovative therapies capable of having a significant impact on the life of those affected by these diseases ” he has declared Francesca Pasinelli, general manager of the Telethon Foundation. Our thanks today goes to Rai Cinema and above all to Totò Cascio for making himself available and wanting to share his story, inextricably linked to a film that marked an era and entered the collective imagination, in support of the importance which covers scientific research “.
Awareness campaigns
For sixteen years Rai Cinema and Telethon have been working together for awareness campaigns on rare diseases. “The idea – he explained Paolo Del Brocco, CEO of Rai Cinema – was born from the belief that the power of images and the more specific language of cinema are able to tell the stories related to these diseases with greater power, and to bring them the attention they deserve. The short ‘With open eyes’ tells the difficult experience of Totò Cascio with his illness. Each of us remembers his big eyes wide open in front of the screen, the words of Giuseppe Tornatore bring back to life the energy and amazement of Totò as a child and make us relive the magic of that masterpiece. The commitment of Telethon, and of Rai Cinema for our small part, is precisely to try to restore hope to that look of Totò that has remained in everyone’s heart “.
Retinitis pigmentosa: first 19-year-old patient treated with gene therapy in Careggi
by Irma D’Aria
What is retinitis pigmentosa
With the expression retinitis pigmentosa we refer to a group of hereditary diseases of the retina that cause progressive loss of vision up to, in severe cases, total blindness. In the most typical form, the first symptoms consist of a decrease in the ability to see in dim conditions and a narrowing of the visual field. In the most typical form, the first symptoms consist of a decrease in the ability to see in dim conditions and a narrowing of the visual field. Some forms, however, begin with the loss of the central part of the visual field. Symptoms typically begin before the age of 20. In some forms of retinitis pigmentosa, in addition to retinal disease, other alterations are found, such as deafness.
Blanca, in the Rai fiction a blind person in the police with the advice of Andrea Bocelli
by Irma D’Aria
The Telethon Research
There are 23 projects financed by the Telethon Foundation on this hereditary pathology with an investment of over 5.5 million euros. Research projects with the aim of identifying the causes of the disease and finding concrete answers in terms of treatments and therapies. Among the Telethon research groups historically most involved in the study of hereditary diseases of the retina is that of Alberto Auricchio of the Telethon Institute of Genetics and Medicine (Tigem) of Pozzuoli. Together with the group led by Alessandra Recchia of the University of Modena and Reggio Emilia, researchers are analyzing and evaluating the use of gene editing, a refined and innovative scientific technique that involves adding a correct copy of the gene inside the cells of the retina or, in more severe forms, the deactivation of the mutated – and therefore “defective” – copy of the gene. “In this way – as Alberto Auricchio explains – a targeted cut is performed at the level of the copy of the gene that produces the toxic protein, deactivating it and leaving only the healthy copy of the gene that works normally”.
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