Lorenzo’s oil (The books of Heart)

i-libri-del-cuore

“What would you know about that? Are you an expert or a scientist?” 
“No, I am just a father”

This is the history of a father who wants his son to live. A kind of will Augusto Odone left because he wanted others to be informed, not to feel alone like him and his family felt when they discovered their child was affected from a rare and irreversible disease. “Two years left”, the doctors said to Augusto and Michaela, “surrender”. But at the time Lorenzo was only six and his parents didn’t have any intention of giving up. Rather than surrender, they started fighting. Lorenzo lived to thirty years.

They read, studied, risked, organized symposia and brought researchers from all over the world together. Challenging official medicines and the common thought, brave and stubborn, they succeeded in finding a cure. It was an oil, “Lorenzo’s oil”, which became the title of a Hollywood’s drama film too.

We have chosen this book to open our column because the history the book speaks of is connected to the birth of the Mitofusin 2 Project. A little boy who gets sick of a rare disease and his parents that don’t surrender and, without being physicians, finally find a cure giving birth to a Project of Research (Progetto Mielina) which is still in progress. We have been inspired by this Project and its history, not only in the choice of the name, but in the management of the disease, in the way of searching a cure, since we decided to face up with determination who told and tell us that “the cure doesn’t exist”, because there is and we will find it.

Just as the parents of Lorenzo did, we have made a Research Project trying to build many bridges between researchers from all over the world and, in the meantime, to spread awareness of the illness everywhere, so that our patients can feel released from their isolation wherever they are. When Michaela and Augusto Odone started their project in the ’90s the web didn’t exist. They didn’t have all the information we have, but they succeded. We believe in our Project, but we need you do the same!

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