The first edition, in 2016, saw a warm participation by the audience on the only day of the festival, on February 29th, at the Casa del Cinema in Rome.
Director and screenwriter Maurizio Rigatti presented “Stareassieme 2014”: a docufilm about the holiday trips of AST (Associazione Sclerosi Tuberosa) a non-profit organization. On these occasions, participanta are able to enjoy a great sense of community and also have the opportunity to face life with normality and serenity developing a sensitivity in being together.
Paolo Calveri, President of AIFP, Italian Association of Periodic Fevers, presented the animated short film “Scilla or the myth of Familial Mediterranean Fever”, a work by Micaela La Regina directed by Giulio Boato. Which mixed mythology and pathology, narrating a myth as the origin of Mediterranean Fever.
With the short film “Dancing with Mr.Wilson” directed by Sara Bevilacqua, through the language of dance theater, Anna Rita Mellone narrates her own story in a courageous and overwhelming way. An act of courageous responsibility towards all, offering the important lesson that one can interact and “talk” with his or her own disease andthat, in order to heal it is essential to give dignity to the condition of being sick. Of this short we can say, quoting Mariangela Gualtieri: There is beauty in everything, a beauty that heals and saves.
“L’amante Sjogren” is a 2013 short film that won several awards, which tells the story of a disease, Sjogren’s syndrome, but also speaks about relationships, prejudices and rebirths. The title refers to a story written by those who have experienced the disease: for this woman, Sjogren was like a lover who took her strength, her time and slowly removed her from the affections. The director is still Maurizio Rigatti, present with the protagonists Daniela Poggi and Gabriele Rossi.
Claudia Crisafio is the protagonist and screenwriter of “Io sono qui”, another short film winner of several awards, which tells the story of a young man affected by the Syndrome of Guillain Barré and his family and clears the importance of knowledge of rare diseases in the medical field. Along with the director, screenwriter Liliana Eritrei attended the award ceremony.
Carlo Shalom Hintermann presented the trailer for his Docu-Film “The dark side of the sun”: for those few children affected with Xeroderma Pigmentosum, sun is a deadly enemy. At Camp Sundown, however, a summer camp in New York created by the imagination and tenacity of their parents, an inverted universe full of charm comes to reality. The life of this small night community is intertwined with dreams that take shape in the animation, conceived by the children themselves. Parents and children recognize themselves here in a single desire: to live their lives to the full, despite their disease.
Una storia complicata (A complicated story) and Il volto di Tommaso (Tommaso’s face) became the protagonists of “The Rarest Ones” by director Roberto Saku Cinardi: the video wanted by the biopharmaceutical company Dompè under the patronage of the Italian Federation of Rare Diseases Uniamo F.i.m.r. onlus was screened on the occasion of World Rare Diseases Day. A spot that summarizes in a few minutes the essence of life of rare diseases patients.
2016 EDITION: THE WORKS
- “Stareassieme 2014”: this short film by director M. Rigatti describes an initiative of non-profit organization AST (Associazione Sclerosi Tuberosa): it is an association holiday for people suffering from tuberous sclerosis. In a non-hospital environment, and through a direct ,intergenerational context and relaxed atmosphere, adults and children are followed by extraordinary volunteers. Alongside the great sense of community that is created, within the initiative the participants have the opportunity to face life with normality and serenity developing a sensitivity in being together.
- In a short film entitled “Scilla or the myth of Familial Mediterranean Fever”, co-produced by AIFP, Micaela La Regina and Giulio Boato have mixed mythology and pathology, imagining that Melaina, daughter of the nymph Scilla, is a patient, and that the god Hermes, moved to compassion by the suffering of the child, decides to sacrifice his finger to cure it. The combination is interesting because the colchicine is also called “finger of Hermes. FMF appears almost always at an early age: in these cases, it is important to start treatment as promptly as possible, paying attention to the transition phase of the patient from childhood to the adult age.
- The theatrical short “Danzando con Mr.Wilson” tells, through the language of dance theater, the true and courageous story of Anna Rita Mellone. Freely inspired by her biography “My life with Wilson!” the theatrical short starts from Anna Rita’s way of being, or from her state of spontaneity and from her infinite willpower, to realize an original creation. Digging into her painful and difficult memories we started from the concept of “cage” in which body and voice are “prisoners” of Wilson’s disease and then tell the turning point, the day in which she decides to “embrace” – accept the disease as a life partner. Marco and Anna Rita bring themselves directly to the scene, and their condition becomes a creative act. They re-create their presence through the authenticity of their gestures. An act of responsibility for all, which takes away space for evil and transforms it into good, which seeks to heal the disease by giving dignity to the condition of being sick. “There is beauty in everything”, says Mariangela Gualtieri, a beauty that heals and saves.
- L’amante di Sjogren (Sjogren’s lover) tells the story of a disease, Sjogren’s syndrome, but it also speaks about relationships, prejudices and rebirths. 18 minutes of true life and emotions elegantly brought to the screen. The title refers to a story written by those who have experienced the disease: for this woman, Sjogren, it was like a lover who took her strength, her time and slowly took her away from the affections, taking her to choose between her husband and her child. A woman devastated but strong, who smiles in pain and finds her reason for living in her son. A short supported by a noble cause: that of freeing Sjogren’s syndrome from the darkness in which it is enveloped.
- “Io sono qui” (I am here): a young man suffering from a rare disease, the anguish of a wife who, in a desperate search for answers and solutions for her husband’s pathology, also risks losing touch with her 5-year-old son, left alone in an unheard silence. Finding an attentive doctor who did not give up in battling the Guillain Barré Syndrome clears the importance of deep knowledge of rare diseases in the medical field.
- “The dark side of the sun”: For a few children sun is a deadly enemy. A rare disease, Xeroderma Pigmentosum, forces them to live in isolation, far from the daytime world of their friends. But this does not happen at Camp Sundown, a summer camp in the state of New York created by the imagination and tenacity of their parents, that gathers patients from all over the world. Here an inverted universe takes shape, full of enchantment. The life of this small night community is intertwined with dreams that take shape in the animation, conceived by the children themselves. Parents and children recognize themselves here in a single desire: to live their lives to the full, despite their disease.
- The rarest ones: Una storia complicata (A complicated story) e Il volto di Tommaso (Tommaso’s face) became the protagonists of “The Rarest Ones “, a video wanted by the biopharmaceutical company Dompè under the patronage of the Italian Federation of Rare Diseases Uniamo F.i.m.r. onlus and screened on the occasion of World Rare Diseases Day. For Tommaso, everything began shortly after his birth: his parents found out he was ill after his neonatal screening. In Italy and in other countries there are other people with this disease, but that of Tommaso is unique due to a small genetic mutation. In the video starring Tommaso himself, rare diseases are compared to rare animals. “Being an animal, and rare, means being important. But I’m just a man with a rare disease”.