SMAspace Cup, the powerchair football tournament is back

SMAspace is back, a space dedicated entirely to spinal muscular atrophy, to ask, as the motto says, everything you ever wanted to know about Sma. And this year, at the appointment on the next weekend of 8-9 July, the focus will be on affectivity and sexuality. An opportunity to understand how and when it is possible to build an independent life, listen to the life experiences of others, and perhaps dispel some taboos that make it difficult if not impossible to live one’s affections and one’s sexuality. But there will also be room for fun, with the SMASpace Cup, the powerchair football mini-tournament in its second edition. The appointment is in Rome, at the Congress Center of the Santa Lucia Foundation, and you can register here, on the site of the Observatory for rare diseases, creator of the initiative together with Famiglie Sma, with the non-conditioning contribution of Roche. “With this initiative we have set ourselves various objectives: to create a sense of belonging to the community, to bring people closer to sport – understood as a moment of recreation and social integration – and to overcome the limits of periodic visits by ensuring that people with Sma could consult those professionals to whom, being accompanied by family members, one often feels embarrassed to ask questions”, he explained Anita PallaraPresident of the SMA Families Association.

The second edition of the SMAspace Cup

SMAspace is in fact a special project to talk about Sma, a rare neurodegenerative disease that affects motor neurons and compromises the ability to move, swallow and breathe. Special because since its launch – in 2020 – it aims to bring patients, caregivers, family members and experts closer together in an informal way that encourages dialogue and questions on the most diverse aspects of the disease: from therapies, to nutrition, rehabilitation, relationships, sex and of course to sports. The advent of new therapies and new devices, in fact, promise to make sport an ever more integral part of the lives of people with Sma, with physical and psychological benefits. As a reminder, during the two-day event scheduled in Rome, the wheelchair football tournament, the SMAspace Cup, will kick off at the Foundation on Saturday with the first two matches, and which will reach its climax on Sunday with the final broadcast on the Twitch channel of the very popular football fan Ylena Frezza.

Focus on affectivity and independent living

But as per tradition, SMAspace will also be an opportunity for exchange, with panels and open discussions, dedicated to the themes of building one’s identity and affectivity, sexuality, and the possibilities of an independent life for young adults with Sma. They will be talking about it on Saturday Jacopo CasiraghiPsychologist and Psychotherapist of the SMA Families Association and Head of the Psychology Service of the NeMO Clinical Center in Milan, Simona SpinoglioPsychologist, Stella Toll Free Number, SMA Families Association, ed Elisa Constantine, Activist of the SMA Families Association. With them, the kids present in Rome will be involved in the creation of an advocacy group, #giovaniSMA.