Società Benefit - attività

Fondazione per la Ricerca sulla Fibrosi Cistica

January 30, 2023

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Fondazione per la Ricerca sulla Fibrosi Cistica

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Stiamo cercando una Cura per tutti. Sostieni la ricerca scientifica sulla fibrosi cistica.

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SCILLA Società Benefit S.r.l. supporta l’impegno la Fondazione per la Ricerca sulla Fibrosi Cistica, coerentemente con l’obiettivo statutario e morale di conseguire un impatto positivo sulla società e sull’ambiente.

La Fondazione per la Ricerca sulla Fibrosi Cistica – Onlus (FFC Ricerca) promuove, seleziona e finanzia progetti avanzati di ricerca per migliorare la durata e la qualità di vita dei malati e sconfiggere definitivamente la fibrosi cistica.

Riconosciuta dal Ministero dell’Università e della Ricerca (MUR) come ente promotore dell’attività di ricerca scientifica sulla malattia, si avvale di una rete di circa 1.000 ricercatori e del lavoro di 154 Delegazioni e Gruppi di sostegno distribuiti in tutte le Regioni italiane, con 5.000 volontari che raccolgono fondi e fanno informazione sulla malattia.

“Stiamo cercando una Cura per tutti. Sostieni la ricerca scientifica sulla fibrosi cistica” è il loro costante impegno, che crediamo prezioso per l’intera collettività.

FFC Ricerca aderisce all’Istituto Italiano della Donazione (IID), che ne attesta l’uso chiaro, trasparente ed efficace dei fondi raccolti, a tutela dei diritti del donatore.

DONAZIONI ALLA FCC RICERCA

Una tua donazione oggi, può cambiare il domani di molte persone

È possibile effettuare donazioni e sostenere i progetti di ricerca contro la Fibrosi Cistica, con le seguenti modalità:

PayPal
Satispay
Bonifico (Unicredit Banca e Banco BPM)
Carta di credito
Conto Corrente Postale C/C 18841379
Donando il proprio 5×1000
Lascito, per il quale si rimanda alle pagine del sito della Fondazione
Doni solidali, acquistabili attraverso lo shop della Fondazione.

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FONDAZIONE FCC RICERCA

FFC Ricerca aderisce all’Istituto Italiano della Donazione (IID), che ne attesta l’uso chiaro, trasparente ed efficace dei fondi raccolti, a tutela dei diritti del donatore.

Puoi sostenere anche tu i progetti di ricerca seguendo le istruzioni disponibili a questo link

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PROGETTI E FIBROSI CISTICA

La storia della Fondazione inizia nel gennaio del 1997 a Verona, ma prende le mosse più indietro nel tempo. Quando il professor Gianni Mastella, che aveva dato vita e diretto per molti anni il Centro Regionale Veneto Fibrosi Cistica, propose a Matteo Marzotto di istituire insieme all’imprenditore milanese Vittoriano Faganelli una fondazione scientifica, la fibrosi cistica era una malattia genetica ancora poco conosciuta e in Italia quasi completamente orfana di ricerca. Marzotto veniva coinvolto nell’avventura perché conosceva la crudeltà della malattia, avendo perso la sorella Annalisa. Come lui il presidente emerito FFC Ricerca Vittoriano, che di fibrosi cistica aveva visto morire due dei suoi tre figli. Era urgente coprire il vuoto scientifico e mettere le basi anche in Italia per una ricerca avanzata che ottenesse progressi per arrivare dallo studio delle molecole al letto del malato.

Dal 2002 ad oggi la Fondazione ha investito 34,5 milioni di euro, con i quali ha sostenuto 439 progetti di ricerca, che hanno coinvolto una rete di oltre 261 laboratori. È riconosciuta dalla comunità scientifica internazionale e contribuisce al progresso delle conoscenze che rendono la fibrosi cistica sempre più curabile.

Fibrosi cistica, la malattia genetica grave più diffusa in Europa

La fibrosi cistica (in passato chiamata mucoviscidosi) è una malattia in genere grave, presente dalla nascita in quanto dovuta a una mutazione del gene CFTR. Chi nasce malato ha ereditato sia dal padre sia dalla madre una copia del gene mutato. Padre e madre sono, quasi sempre senza saperlo, portatori sani di una copia di tale gene, che normalmente determina la sintesi di una proteina chiamata CFTR (Cystic Fibrosis Transmembrane Conductance Regulator), deputata al regolare funzionamento delle secrezioni di molti organi. Tale proteina funziona poco o per niente in chi nasce con la doppia copia del gene mutato. In Italia c’è un portatore sano ogni 30 persone circa. La coppia di portatori sani, a ogni gravidanza, ha una probabilità su quattro di avere un figlio malato, cioè con due copie del gene mutato.

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