• Italiano

Can a sensitive topic such as disability be treated with humor and without pity? Can you release a commercial to help research without falling into the trap of being merely rhetoric? The Italian comedian Checco Zalone has successfully done so. He made a video to support the fundraising campaign for Sma Families, a non-profit organization managed exclusively by parents of children and adults suffering from spinal muscular atrophy. Until Saturday, October 8, it will be possible to donate sending a text message to the phone number 45599. Moreover, on 1 and 2 October volunteers will be distributing the gadget of solidarity, a “dream box”, in numerous Italian squares.

The commercial has been defined as “politically incorrect”, “disrespectful”, “bad”. Simply, it has hit the mark. With a smile and very gently, it tackles the topic of the disease and the thousands of daily difficulties people with Sma (and other debilitating diseases) and their families face. Undoubtedly, the video has been produced to raise money. But thanks to Checco Zalone’s skills, it also serves to reflect on our relations with the sick. How many times, busy with our thoughts, haste, occupations and other things, we take it all for granted. Perhaps, we do not realize that for many people it is not the same. That time has a different rhythm for them, that patience has an enormous value, that the true importance of owning certain assets is far more relative than the one we attributed to it. A reflection that ends with a laugh, because basically the ones to be ridiculed are those who do not see beyond their noses, the behavior of the kind of people who snort when their bus “wastes time” to pick up a disabled person on a wheelchair. Or the many ill-mannered people who occupy parking lots reserved for people with disabilities (one can observe many such cases), without thinking of the difficulties of those who really need that place. Such attitudes, unfortunately, are far more common than one might imagine, being the result of “carelessness” towards the other, which makes us become insensitive.

Checco Zalone shot this video for free and only in a couple of hours (on Sunday morning, it was launched on the Facebook page of the comedian, as well as on his official site checcozalone.it)- It has reached hundreds of thousands of views and numerous positive feedback.

Where does the idea of shooting this commercial come from?” Anita Pallara, one of our associates – explains Barbara Pianca, spokeswoman for Sma Families – had met Checco on vacation and they became friends. The proposal to make this video springs from this friendship. The artist and his production company, Taodue, have made a great gift. They asked our families if there was a child willing to shoot the commercial, then they did auditions, following which they chose Mirko”.

After all, there is a “secret” behind: Mirko, 13, lives in a village in the Italian province of Trento, has a certain familiarity with the camera. Together with his sister, he has a Youtube channel, which is called “mirkoelindashow”, where they post funny videos.

Anita is a 27-year-old woman from Bari. Her parents found out that she had Sma when she was only one year old. She has never walked: since the age of 3, she has always been on a wheelchair. Yet, she has plenty of desire to fight. “I met Luca (Medici, Zalone’s real name, ed) a few years ago at a swimming pool in Alberobello, where he was making a movie. We entered immediately in tune and have become friends over time.”

What about the idea to shoot the video? “It has come to my mind this year, because it is a very important moment for people with SMA: it will be possible to administer a new medicine to children with the most severe forms of this disease. I proposed this initiative and he agreed. I wanted a beautiful campaign, but without mercy in there. I loved Luca’s commercial.”

What is your biggest dream? “Nice question – Anita answers with a laughter -. In the short run, to  see this new drug administered and begin to put an end to the word Sma. Whereas generally speaking, see the life to the best of my abilities and enjoy good health that would allow me to live well.”

SMA is a rare genetic condition that attacks the cells of the nervous system and of the spinal cord, especially in the anterior horn, from where depart the nerves to the muscles. As a consequence, one cannot walk, control their head and neck, nor even swallow. Usually, it occurs if both parents are carriers. In its acute form (which is widespread), the prognosis is poor and leads to death within a few months, sometimes even weeks.

A little-known disease that ended up into the spotlight because it was one of the diseases Vannoni promised to treat with the Stamina method. Now, a lifesaving has been tested, which showed a certain effectiveness, and the goal is to begin its administration as soon as possible. There are about two hundred people throughout Italy, especially infants and children, affected by this therapeutic regimen.

“This is the first drug available,  and it is a turning point in the history of Sma – explains a note written by the association -, because one of the experiments done gave a positive result that pushed the pharmaceutical company to distribute the drug as soon as possible and for free in severe cases, because, while not curing the genetic disease, it has been shown that it extends life and partially improves the clinical picture of the younger children. Today, on Thursday, September 29, the inclusion criteria to access the administration of the molecule will be communicated to the families. The molecule will be administered via intrathecal injection, during a hospitalization period. For this reason the association wants to collect immediately a large sum of money, so as not to put off the beginning of this cure, because for some children to wait a month or a week can make the difference.”

Found raising through text messages, which will be used to support the clinical centers where therapies are done. It a cycle of four injections during hospitalization. And unfortunately, the times are not always compatible with those of the National Health Service.

But in spite of our expectations, the solidarity campaign is not going well. The video had a huge success, with about 5 million shares, but those who have actually sent a text message are less than expected: about 20,000. Let us help them!


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