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AMBASSADOR DAY, UN EVENTO DEDICATO ALLA RICERCA SULLA SINDROME KABUKI


La serata di gala a Villa Reale a Monza occasione per far conoscere e aiutare gli studi sulla malattia rara

di REDAZIONE 

PRESERRE (CZ) –  26 NOVEMBRE 2019 –  “Facciamo squadra contro la sindrome Kabuki”.

È il messaggio lanciato dal Prof. Giuseppe Merla, scienziato e genetista presso l’IRCCS ‘Casa Sollievo della Sofferenza’ di San Giovanni Rotondo, come presentazione dell’evento “Ambassador Day 2019- Ambassador for Kabuki” la cui prima edizione si svolgerà il 29 novembre nell’incantevole contesto di Villa Reale a Monza.

Ambassador for Kabuki è il riconoscimento con cui verranno insigniti gli ospiti della serata, che è molto più di un semplice titolo onorifico. Essere “ambasciatori per la sindrome Kabuki” significa sposare una causa molto nobile.

La sindrome Kabuki è, infatti, una malattia rara congenita che colpisce uno su circa 30.000 nati (sono all’incirca 1.000 i casi ad oggi diagnosticati in Italia). Gli individui affetti presentano anomalie congenite multiple con facies tipica (che ricorda le maschere Kabuki del teatro giapponese da cui deriva il nome della malattia), anomalie scheletriche, disabilità cognitiva lieve-moderata, deficit della crescita postnatale e cardiopatia.

Gli studi del prof. Merla sulla sindrome Kabuki iniziano nel 2011, subito dopo la scoperta del gene che causa la malattia. “In otto anni di ricerca, abbiamo fatto passi da gigante; grazie alle nuove tecnologie abbiamo oggi un test genetico rapido in grado di definire con precisione la causa molecolare della malattia.

Grazie ai nostri studi sappiamo quali processi cellulari sono alterati negli individui affetti e abbiamo ora modelli di studio efficienti per la ricerca di una cura. Possiamo dire di essere a buon punto, ma il supporto della società civile e il sostegno di iniziative come questa sono davvero essenziali per la nostra ricerca”.

Durante la serata, presentata dalla nota giornalista e conduttrice Safiria Leccese, che premierà tutti gli “Ambassador for Kabuki”, si alterneranno alcuni interventi volti a promuovere la ricerca.

Dopo l’intervento del prof. Merla, la parola andrà a Don Francesco Cristofaro, sacerdote e conduttore della trasmissione “Fatti per il Cielo” in onda su Padre Pio Tv, media partner televisivo dell’evento.

 “E’ fondamentale dare una mano alla ricerca, di qualunque malattia si tratti, ed è una grande responsabilità essere ambasciatore Kabuki– afferma Don Francesco -: soltanto con l’aiuto dei cittadini e delle persone di cuore si possono sostenere le ingenti spese che gli studi sulle sindrome rare purtroppo comportano.  

Quando Matteo Redenti mi ha raccontato la storia della sua piccola, mi sono commosso e mi sono subito attivato per aiutarlo. Sono stato a conoscere il prof. Merla,  ho visto dove e come lavora.

Non possiamo restare indifferenti. Anch’io vivo sulla mia pelle il problema della disabilità, essendo nato con una paresi spastica alle gambe e, proprio per questa ragione, affermo con forza che la ricerca va aiutata in tutti i modi possibili per dare una speranza di una vita migliore, e magari una soluzione, a chi soffre”.

Tra gli ospiti d’onore della serata “for Kabuki” anche la governatrice di Kiwanis International- Dsitretto Italia e San Marino, Avv. Maura Magni.

Sono davvero onorata di essere presente ad un evento tanto importante dove l’obiettivo principale è quello di aiutare la ricerca sulla sindrome Kabuki.

Il sostegno alla ricerca sulle malattie rare ci vede particolarmente impegnati in questo anno sociale e la nostra organizzazione raccoglierà ulteriori fondi anche per altre serate benefiche che stiamo già calendarizzando.

La testimonianza di questo impegno verrà data in questa occasione con la presenza di una nutrita delegazione di soci. Kiwanis, nello specifico, ha l’obiettivo di “servire i bambini del mondo” e da oltre cento anni aiuta i bambini ad avere un presente ed un futuro migliore.

Ecco perchè siamo sensibili verso quei piccoli che, a causa della malattia, non possono vivere un’infanzia simile a quella dei loro coetanei: questi bambini hanno assoluto bisogno di tutti noi”.

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