From Civitanova Marche to Sebenico in Kayak: 180 km in 20 hours to support patients with cystic fibrosis and turn on the spotlight on “care orphans”
In an Italy that too often forgets the silent battles of rare patients, Alessandro Gattafoni continues to carry on his mission with strength, courage and determination. Patient with cystic fibrosis, the athlete from the Marche has successfully completed the fourth edition of the project “125 miles for a breath”crossing in Kayak 180 km of the Adriatic Sea from Civitanova Marche to Sebenico, Croatia, in just over 20 hours.
An exceptional company that becomes a symbol of hope, resilience and awareness. Conceived and promoted with the Italian Cystic Fibrosis League (LIFC)the initiative aims to make known the most widespread serious genetic disease and the importance of sport as therapy to improve the quality of life of patients.
The 2025 edition was made with the unquestioned support of Vertex Pharmaceuticals And he wanted to put in the spotlight in particular the “Orphans of care”: those who, due to a specific genetic mutation, cannot yet access the innovative drugs available today.
“Crossing the sea is synonymous with difficulty. My effort is dedicated to all patients with cystic fibrosis, and in particular to those who feel invisible every day,” said Gattofoni at the end of the crossing.
His business will be celebrated Sunday 13 July at 5 pm at the Sailing club of Civitanova Marchein an event open to citizenship and organized with the support of the Rotary Club. Together with Alessandro, the Lifc president will be present Antonio Guarinithe mayor Fabrizio Ciarapica And Elisa IsoardiRai face and historical supporter of the cause.
“Every year Alessandro reminds us how powerful the strength of sport is, even for those who live with a complex disease such as cystic fibrosis,” he said Federico ViganòCountry Manager of Vertex Italia and Greece.
The new drugs for cystic fibrosis and the struggle of “cure orphans”
In recent years, cystic fibrosis has seen important therapeutic progress. The introduction of drugs such as Kaftrio® It has radically improved the quality of life of patients, transforming chronic pediatric disease, with an average age today around 50 years.
Kaftrio®, which combines three active ingredients to correct the defective CFTR protein, is effective for about the 70% of patients. But it remains a 30% excluded from these revolutionary therapies. These are “cure orphans”, those who coexist with genetic mutations for which there are still no available treatments.
“We are working so that no patient remains behind,” underline the Lifc president Antonio Guarini. “The approval by the European Commission of the extension of use of Kaftrio to children over 2 years of age is a strong signal. Now it is necessary that AIFA also quickly receives it in Italy”.
The hope, thanks to the research and pressure of associations such as LIFC, is that even patients excluded today may soon have access to effective care and improve their daily lives.
One more breath, so as not to remain invisible
Through the project “125 miles for a breath”Gattofoni not only tells his battle, but becomes the spokesperson for thousands of people who live the challenge of cystic fibrosis every day. His crossing has become a metaphor: how to face a stormy sea, counter hundred, without ever losing sight of the goal.
It is possible to support the campaign of the Italian Cystic Fibrosis League and Alessandro’s project through the platform Gift network At the link: https://www.reetdelono.it/progetto/un-respiro-piu-0
Because, as Alessandro recalls, “How much is a breath worth?”
