Always Live Smiling is the book written by Marco.
The initials are the same as in ALS. Amiotrophic Lateral Sclerosis, the “bitch”, as Stefano Borgonovo called it.
Marco was diagnosed in 2008 after a very full youth made of sports, many friends, an irresistible thirst for people and places. A hunger for life that doesn’t fade, emerging from the pages of the book: thoughts, memories, posts published on his blog, short and autobiographic stories that plunge us in Marco’s existence. A man well determined to keep fighting.
Marco’s book (English version) is on sale at Amazon.com
This award for social engagement for 2016 has been given to me, but it goes entirely to the Marco S. – NO ALLA SLA Onlus…
Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons carry nervous signals from the brain to the spinal cord and from the spinal cord to the muscles in the whole body. The progressive degeneration of the motor neurons in ALS eventually leads to their death.
When motor neurons die, the ability of the brain to start and control muscle movement is lost. Voluntary muscle action is progressively affected, resulting ultimately in total paralysis. The worst part is that all other neurological functions aren’t affected : the patient stays perfectly lucid, prisoner of a body that is less and less able to move.
ALS’ causes are unknown, but the disease is seemingly provoked by multiple causes and not by a single one. Among the most plausible causes are a genetic predisposition, an excess of glutamate, growth factors shortage, toxic-environmental factors and more.
ALS strikes mostly male and female adults older than 20 (more often 50 and older). In Italy three new ALS cases are declared every day, and there are 6-8 cases for every 100.000 people (source : AISLA).
Today no cure exists for ALS. The only medicine, able to slow down motor neuron degeneration, is riluzole. In recent years searches for a cure have multiplied, while scientists try to find products able to ameliorate patients’ quality of life in their vital functions (feeding, breathing…).
Marco, for those who don’t know him, is an Italian former soccer player suffering from ALS since 2008. He lives in his hometown, Mantua. Once a tireless sportsman, now he’s unable to move. He lives thanks to artificial ventilation and a tube feeding him. All his mental faculties are intact.
How to show solidarity and love to a friend with an incurable disease, perfectly lucid in a body that doesn’t obey anymore?
That’s what we asked ourselves.
Marco already receives fundamental support and encouragement on social media, and his closest friends help him in more practical ways, but we decided to do something more.
The no-profit organization MARCO S. – NO ALLA SLA has three main objectives:
- Helping ALS patients, and among them Marco, from a financial point of view. Maybe many people aren’t aware of it, but suffering from ALS is a very expensive business : you need to have professional round-the-clock help at home, and people coming to your bedside daily for physical therapy and nursing care, there is expensive material to buy. And, by the way, you still have bills to pay to keep your house. Regional funding covers only a small part of these expenses (and has been cut drastically in 2014).
- Organizing fundraising events to raise consciousness, in Mantua but not only, about this terrible disease and to make Marco feel less alone in a tangible way.
- We also want to contribute to the fight against ALS giving a part of the money raised to other causes, working with other organizations, associations or individuals to became more efficient and make a difference
who we are english text