Reggio Emilia, 22 August 2023 – One hundred and thirty-seven thousand euros collected in forty-eight hours. And surely many more will come. A story of perseverance, friendship, positivity and emotion that comes from Reggio Emilia. The story of Simone Massari, 49 years old, a graduate in economics and commerce, husband and father of three, who was diagnosed six months ago with SLA. The terrible ‘Lou Gherig disease’, which takes its name from one of the most famous American baseball players who died on June 2, 1941 precisely because of amyotrophic lateral sclerosis. Which is, by definition, a progressive neurodegenerative disease that affects the neurons and cells in the spinal cord that allow movement.
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Simone, before the disease made its way into her body and began to limit her movements, worked as a senior product manager in an important company in the province of Reggio, but, above all, it is I’ve always been a health-conscious and true sportsman. Well known in the field of Reggio minor basketball where he played in various teams and as many categories, and, once he hung up his ‘shoes’, he dedicated himself with equal satisfaction to tennis and padel.
That’s why the news of the disease that struck him has left everyone dismayed: sportsmen, friends, colleagues. “I have spent most of my life both traveling for work than for fun, practicing sports and having fun with friends, but today all this is no longer possible for me”, says the person concerned. The first symptoms? During a padel match. The left leg does not respond and Simone falls. For no apparent reason: “I started to feel weakness in my left arm and leg. Today I’m in a wheelchair.” In six months the physical decline was inexorable. Inversely proportional to the mentality and spirit with which Simone threw himself body and soul into facing the most difficult challenge of her life.
As a true sportsman, he didn’t give up: “I am followed by a physiatrist, a physiotherapist, a dietician and a psychologist. But I keep getting worse”. Then the taking of the only drug approved in Italy – “Over twenty years ago” – and the entry, in the United States, into a trial – “But I won’t know until December if I’m taking the drug or placebo” -. Until Simone’s sister, Barbara Massari, searching the internet, discovers the presence, at Miami, from a private clinic – Body Science -, specialized in the treatment of ALS: “I was with them at the end of July, and I trust that the protocols they prescribe on patients can help me stop the neurodegenerative process, if not, even make me improve”.
And the cure medicines in the United States cost a fortune, hence the idea of crowdfunding through the gofundme.com platform. Shouting “Stay Strong, stay positive and never give up!” (“be strong, be positive and never give up!”) a beautiful and moving solidarity contest started. In 48 hours the amount of donations exceeded 137 thousand euros – even with peaks of 3,000 euros and 648 total donors at the time of writing- -. Friends, former team and school mates, acquaintances, work colleagues. No one held back: “The goal is to cover the expenses for the next visits – Massari says -. But I believe, and I hope, that I will be able to return to the USA many other times in my life”.
2023-08-22 04:32:34
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