Camilla is the name of two little butterfly girls, both born in December 2017 and who flew away in 2018. We followed them in Modena from birth and became very fond of them.
Camilla is also the name of a butterfly (Limenitis Camilla) that inspired us to create our logo.

Epidermolysis bullosa (EB), better known as “butterfly children syndrome”, is a serious and rare genetic disorder that affects the skin and mucous membranes, making them as fragile as butterfly wings. A butterfly child can be injured by anything, and simple everyday activities such as eating, drinking, sleeping, walking, grasping objects, playing or receiving affectionate gestures cause painful blisters that require lengthy daily treatment and have a significant impact on the quality and life expectancy of these patients.

There are different forms of EB with varying degrees of severity. The most severe form is unfortunately fatal, and patients do not survive beyond the first few months of life. This was the case for two little butterfly girls, both born in December 2017 and who passed away in 2018, both named Camilla, whom we had followed since birth and to whom we had all become very attached.

To date, there is no definitive cure for this disease, and the most concrete hopes are pinned on gene therapy, which was pioneered worldwide in Modena by the team led by Prof. Michele De Luca, director of the Centre for Regenerative Medicine (CMR) at the University of Modena and Reggio Emilia (Unimore).

Also in Modena, at the Dermatology Unit of the University Hospital, at that time headed by Prof. Giovanni Pellacani, a multidisciplinary clinic was set up to follow EB patients in the daily management of their disease and to collaborate with the University to study the pathology and provide valuable data for diagnosis and gene therapy (in 2022, this became a Diagnostic-Therapeutic-Care Pathway with over 30 specialists, coordinated by Prof. Cristina Magnoni).

The CMR also housed the university spin-off Holostem Terapie Avanzate (acquired in 2023 by Fondazione Enea Tech e Biomedical), the first biotechnology company entirely dedicated to the development, production, registration and distribution of advanced therapy medicinal products (ATMPs) based on epithelial stem cell cultures for cell and gene therapy, which in 2015 obtained marketing authorisation for the world's first formally stem cell-based drug (Holoclar) for corneal surface reconstruction.

Especially after the publication in Nature in 2017 of a life-saving gene therapy treatment on almost the entire body of a small butterfly child, which made headlines around the world, many patients from every corner of the globe turned to Modena for help.
This highlighted the need to provide practical and ongoing support to the many families who came to Modena to participate in research or to receive consultations and treatment.

This led to the idea of founding a non-profit association to support both institutions (the University of Modena and Reggio Emilia and the Modena University Hospital) and patients, open not only to butterfly children but also to other patients who could be treated in the future in Modena with cell and/or gene therapies developed by the Centre for Regenerative Medicine ‘Stefano Ferrari’ Centre.

To bring the idea to fruition, we created a team of 11 people, coordinated by Stefania Bettinelli (at the time head of external relations at CMR and Holostem and a long-time supporter of patients), who put their skills and energy to work to found the association, which we named after little Camilla, who represents, as a sort of synecdoche, all the patients who need and will need our help.

Camilla is also the name of a butterfly (Limenitis Camilla) that inspired us to create the logo.
We like to think, in line with Edward Lorenz's mathematical and physical theory of the butterfly effect (according to which the beating of a butterfly's wings in Brazil can cause a tornado in Texas), that thanks to the wings of solidarity, a little help in Modena can change the life of a patient on the other side of the world.