In a documentary the courage of those who ‘dance with Friedreich’

Friedreich’s ataxia condemns young people to a wheelchair within a maximum of 20 years, who, in almost 8 out of 10 cases, are children or adolescents when they are diagnosed. A disease that ‘breaks’ legs, but not dreams. They, the patients, continue to challenge the limits and look to the future. ‘You give up! I dance with Friedreich’ is the first campaign in Italy that tells of their courage. It does so with a documentary film that gives voice to the patients, with a radio spot and with a series of online stories. The actress Vittoria Belvedere participates in the documentary, because those who ‘dance with Friedreich’ are “an extraordinary example for all of us”, she also says as a mother.

The initiative was launched by Biogen on the occasion of World Ataxia Day, celebrated on September 25, with the patronage of Aisa Odv, the Italian Association for the fight against ataxic syndromes. The goal is to “raise the curtain on the needs of a community of patients and families who have remained silent until now”. There are approximately 15,000 people in the world with Friedreich’s ataxia or Fa, a rare and hereditary neurodegenerative disease caused by variants of the frataxin gene, which in 75% of cases is diagnosed between the ages of 5 and 18 and involves an average life expectancy of about 37 years. In Italy, based on the most recent epidemiological study conducted in Lazio, the prevalence is estimated at 1.07 cases per 100,000 inhabitants.

“The initial symptoms of Friedreich’s ataxia – explains Caterina Mariotti of the IRCCS Besta Neurological Institute in Milan – appear mostly during adolescence and are characterized by weakness, loss of coordination, fatigue and difficulty with balance. The initial symptoms do not always directly and specifically point to the disease and for this reason the diagnostic process is sometimes particularly long and difficult. A characteristic that can help in the diagnostic orientation is the presence of cardiac involvement that is associated with neurological symptoms. The course is debilitating and in 10-20 years, in most cases, it is necessary to use a wheelchair. As the disease progresses, other symptoms appear such as vision problems, hearing loss, difficulty speaking, scoliosis, diabetes mellitus. To date, there are no therapies capable of blocking the disease, but molecules capable of attenuating and delaying the symptoms are being developed and evaluated, which could represent an important opportunity for patients and their families”.

The docufilm at the heart of the campaign features 4 patients. Alongside their voices is that of Vittoria Belvedere, who as a mother of 3 teenage children wanted to give her contribution to shed light on the lives of children with Friedreich’s ataxia and their families. The documentary will be available starting October 19 on the social channels of Aisa and Biogen. “As an association, we hope that this campaign will be the first step in raising the curtain on a rare disease that turns the lives of young people and adolescents upside down and that has remained almost unheard until now – says Maria Litani, national president of Aisa – Those who live with AF do not resign themselves to the limits of the disease. The body progressively unlearns, but the mind continues to advance and with it advances the determination to look to the future with intensity. This is where the metaphor at the heart of the campaign comes from: ‘dancing with Friedreich’ is the symbol of the lightness and fullness of living, which the disease cannot erase”.

“Giving voice to the stories of these young people has been an exciting and extraordinary experience – comments Vittoria Belvedere – because their words convey passion, the desire not to stop in front of the walls that life puts in front of you and precisely to dance with life. They are an extraordinary example for all of us and for me as a mother they are also the testimony of how young people have infinite resources and potential, that we parents must accompany to help them fly with their strength, as the protagonists of ‘I dance with Friedreich’ did”.

“At Biogen – says Giuseppe Banfi, CEO of the American company in Italy – we are committed to medical-scientific research to provide therapeutic answers to those dealing with Friedreich’s ataxia, but we are convinced that our commitment must go further, to promote a full understanding of the multiple life needs of patients and their families. Hence the idea for this campaign, whose title comes from listening to the testimonies of patients and families, which is a hymn to the desire to live that goes far beyond the disease. We hope that this project can contribute to giving voice to a community that is unfortunately still hidden and therefore unheard”.