This year Telethon will allocate over 27 million euros to research against rare genetic diseases, 9 percent more than it was able to invest in the previous two years: 15 million for the development of laboratory projects, another 12 will support the activities of the institutes founded by Telethon. «Funds – says the president, Luca Cordero di Montezemolo – which are like the profits of a company».
In the year of volunteering, defeating muscular dystrophy and other genetic diseases is a commitment that is renewed, but also a challenge. Almost a metaphor for politics, an opportunity that President Montezemolo does not miss, during the meeting held yesterday in Turin «Merit to them: the people who make… Telethon»: «Telethon – says Montezemolo – is the flagship of Italian research: its large team, which brings together private citizens, companies and associations, can be considered proud of the results it is obtaining». A demonstration of how, even in Italy, «where there is a valid, meritocratic and transparent organization it is possible to build that “Big Society” that is talked about a lot in other European countries».
There are 101 Italian research laboratories which, thanks to Telethon, will be able to continue their studies even if only to improve the quality of life of the sick, where there is still no hope of recovery. Approximately 410,000 euros will be allocated to Piedmont: the University's Department of Anatomy, Pharmacology and Forensic Medicine will take part in a multi-centre project that will involve three other research groups from Milan and Genoa in search of the molecular mechanisms underlying Phelan syndrome -McDermid.
In the Gallery of Modern and Contemporary Art there are many of the approximately 2,000 volunteers scattered throughout Italy, in each of the 71 provincial coordination offices. Mario Calabresi, director of The print , met some of the witnesses of hope that every year, beyond the television marathons, give every day a reason to support Telethon. The researcher Ferdinando Fiumara has chosen to return from the United States to Italy to give his contribution to the study of the mechanisms of proteins in the disease.
There are also the sick who have themselves become testimonials of Telethon's commitment: Alberto Fontana, from Milan, 39, suffers from spinal muscular atrophy and is the national president of the Italian Union for the fight against muscular dystrophy: «With the family you have to decide a certain point which path to take, whether or not to get out of the corner that the disease often puts in front of you…».
Montezemolo talks about a team: «You who never give up, who also face truly serious problems within your family - he says, addressing the sick, their families and volunteers -, you are an example of how to team up in a country where basically everyone minds their own business». And from the Telethon model here is another warning for Italy: «Our country is the victim of "looking back". Our strength, on the other hand, is "looking ahead", giving ourselves a goal, a single great clear goal». Public and private together.
MARCO ACCOSSATO – 16 July 2011 –
