Qhen sport meets solidarity, the impact is powerful. At the Rugby Rome a shirt and a logo are enough to transform a simple warm-up into a more important message. Already on the first day of the Serie A championship in L’Aquila, the team took to the field for the usual pre-match activation work with a very particular logo on the back: that of the association “CDKL5 – Together towards the cure”. CDKL5 deficiency disorder is one rare genetic disease which affects both boys and girls and causes serious motor and neurological development problems. Sunday 26 Octoberon the occasion of the home debut against Civitavecchia (2.30 pm at Tor Pagnotta), before kick-off, Rugby Roma and the association will present this collaboration to the fans and families.
Rugby Rome for research: on the pitch with the shirt in support of children with CDKL5 deficiency
«We are deeply grateful to Rugby Rome for choosing to share with us the most authentic value of this sport: team spirit. See our logo association ‘CDKL5-Together towards the cure‘ – says the president Barbara Verdirame – on the players’ shirts it is an emotion that goes beyond the pitch for us: it’s like seeing hope run, tackling difficulties and chasing the goal of the search. This gesture of closeness transforms every match into a symbol of solidarity and every training session into a moment of awareness.”
«Even the third half, with its climate of meeting and sharing, becomes an opportunity to spread knowledge and build bonds. Knowing that Rugby Roma takes the field also means a lot to us for our families: it makes us feel part of a bigger team, united in the same game against the disease. This collective energy that pushes us even more to continue the path towards the cure together.”
What is CDKL5 deficiency disorder
CDKL5 deficiency disorder it is a rare genetic disease that affects both boys and girls (the latter are more numerous) and causes serious motor and neurological development problems, including epilepsy.
The players of Rugby Roma on the pitch with the special t-shirt for the CDKL5 association – Together towards the cure (Photo by Stefano Spalletta)
Most of these children cannot walk, talk or feed themselves. To date, no diagnosis is given during pregnancy, unless a specific and non-routine analysis is done. It is not considered a hereditary pathology, but it is recommended to carry out a targeted investigation in case of subsequent pregnancies. Identification of the syndrome is often difficult and early diagnosis can be complicated.
At a global level, they are estimated around 1,500 cases diagnosed. In Italy, according to the Rare Diseases Portal, there are at least 150 diagnosed patients. However, it is likely that the number of undiagnosed cases is higher, due to poor knowledge of the disease.
The players of Rugby Roma on the pitch with the special t-shirt for the CDKL5 association – Together towards the cure (Photo by Stefano Spalletta)
The support of Rugby Roma: «In rugby, as in life, no one moves forward alone»
On behalf of the Rugby RomeThe president Svevo Valentinis explains what was the key that led the club to decide to support the association: “Support means being there and in rugby, as in life, no one moves forward alone. To support is to lend a hand, to share the burden, to believe in the other. It is the silent force that holds together, that makes a team, that transforms a group into a family. Support is the heart of everything that is truly worthwhile.”