Telethon is twenty years old. An event which this year takes place as usual on Rai December 17 to 19. "Solidarity, merit, research, transparency are the key words - said House Speaker Gianfranco Fini, during the presentation Telethon Montecitorio - inspiring Telethon: almost a political agenda, in the proper sense of the word polis means if political interest of the city ".
" It took twenty years of work, but now - said the president of Telethon Luca Cordero di Montezemolo - the word 'cure' is no longer a taboo. Genetic diseases can be defeated. The Italians' confidence was well placed and now it is time to insist. "" In the year that ends - has nevertheless warned the director general of Telethon, Francesca Pasini - we have achieved two major successes: in April we gave via two new clinical studies on 14 children who seek to establish the validity of therapy genica messa a punto nei nostri laboratori. Ad ottobre poi abbiamo siglato insieme al San Raffaele di Milano un accordo con una multinazionale farmaceutica che, poggiandosi sui risultati della ricerca sviluppata presso l'Istituto San Raffaele Telethon di Milano, punta a garantire a tutti i pazienti nel mondo entro pochi anni la fruibilità delle terapie per sette malattie".
Ma di fronte al presidente della Camera Gianfranco Fini, dal quale ha trovato sostegno, il presidente di Telethon non ha esitato a parlare della "inaccettabile" penalizzazione della ricerca e del volontariato. Montezemolo ha criticato i tagli decisi dalla finanziaria al 5 per mille che, assicura, "che ci tolgono trequarti dei fondi disponibili e ci costringono a rinunciare a due milioni euro to advance the research. "" I hope and I am not alone, that the concerns about the diminished resources available through the mechanism of 5 per thousand, will be followed by a broad and concerted commitment to fully restore these resources, "he said the chairman of the House.
Meanwhile, the machine Telethon was shown not to be missed shots and Professor Andrea Ballabio, Telethon Institute director of Naples, has announced the creation of a laboratory Telethon at the Texas Children's Hospital in Houston. The center will be devoted to the study of neurological diseases of children, commissioned by an American association of patients, Beyond the Batten Disease Foundation, founded in 2008 by Craig Benson and Charlotte, after their son Christian was diagnosed with a serious disease lysosomal Batten's disease. "In the year that ends - has nevertheless warned the director general of Telethon, Francesca Pasini - we have achieved two major successes: in April we launched two new clinical studies on 14 children who seek to establish the validity of therapy gene developed in our laboratories. In October, then we signed with the San Raffaele Hospital in Milan into an agreement with a multinational pharmaceutical company, leaning on the research results developed at the San Raffaele Telethon Institute in Milan, aims to ensure that all patients in the world within a few years the availability of treatment for seven diseases. "
" It took twenty years of work, but now - said the president of Telethon Luca Cordero di Montezemolo - the word 'cure' is no longer a taboo. Genetic diseases can be defeated. The Italians' confidence was well placed and now it is time to insist. "" In the year that ends - has nevertheless warned the director general of Telethon, Francesca Pasini - we have achieved two major successes: in April we gave via two new clinical studies on 14 children who seek to establish the validity of therapy genica messa a punto nei nostri laboratori. Ad ottobre poi abbiamo siglato insieme al San Raffaele di Milano un accordo con una multinazionale farmaceutica che, poggiandosi sui risultati della ricerca sviluppata presso l'Istituto San Raffaele Telethon di Milano, punta a garantire a tutti i pazienti nel mondo entro pochi anni la fruibilità delle terapie per sette malattie".
Ma di fronte al presidente della Camera Gianfranco Fini, dal quale ha trovato sostegno, il presidente di Telethon non ha esitato a parlare della "inaccettabile" penalizzazione della ricerca e del volontariato. Montezemolo ha criticato i tagli decisi dalla finanziaria al 5 per mille che, assicura, "che ci tolgono trequarti dei fondi disponibili e ci costringono a rinunciare a due milioni euro to advance the research. "" I hope and I am not alone, that the concerns about the diminished resources available through the mechanism of 5 per thousand, will be followed by a broad and concerted commitment to fully restore these resources, "he said the chairman of the House.
Meanwhile, the machine Telethon was shown not to be missed shots and Professor Andrea Ballabio, Telethon Institute director of Naples, has announced the creation of a laboratory Telethon at the Texas Children's Hospital in Houston. The center will be devoted to the study of neurological diseases of children, commissioned by an American association of patients, Beyond the Batten Disease Foundation, founded in 2008 by Craig Benson and Charlotte, after their son Christian was diagnosed with a serious disease lysosomal Batten's disease. "In the year that ends - has nevertheless warned the director general of Telethon, Francesca Pasini - we have achieved two major successes: in April we launched two new clinical studies on 14 children who seek to establish the validity of therapy gene developed in our laboratories. In October, then we signed with the San Raffaele Hospital in Milan into an agreement with a multinational pharmaceutical company, leaning on the research results developed at the San Raffaele Telethon Institute in Milan, aims to ensure that all patients in the world within a few years the availability of treatment for seven diseases. "
(Fonte RAI )
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