Saturday, November 14, 2015: FIRST ITALIAN CONVENTION on Muscular Dystrophy of the cingulate from Calpaine 3 deficiency. Promoted and organized by AICa3 ONLUS in collaboration with La Nostra Famiglia of Bosisio Parini and FONDAZIONE CA' GRANDA Ospedale Maggiore "Policlinico" of Milan.
It was a day of work, of insight, but most of all it was a day of celebration as we truly celebrate the achievement of something that seemed like a dream.
A few years ago, to think of achieving what we have managed to do seemed almost fabulous, a utopia. But that's not how it was, 4 years after the foundation of AICa3 we are now facing something concrete: confronting the Muscular Dystrophy of the Belts due to Calpaine 3 deficiency, from the gene to the patient. Yes, the patient, because behind a disease there is always a person with his own experience, his own story, which only asks to be helped.
I hope we have succeeded in our intent to offer a clearer and at the same time complex understanding of Calpain 3 Deficiency Girdle Dystrophy, offering food for thought and helping to find answers, even those that are not exhaustive.
We wanted to be here, researchers, doctors and patients because we believe in the circularity of communication, so that the conference would be a moment of sharing a problem that goes far beyond the simple functional disorder that limits and compromises the normal course of life and relationships of those affected by dystrophy, their adaptation, motivation to continue, their desire to succeed, with the risk of drastically lowering the sense of self-confidence.
We have called to confront different skills and sensitivities: from the world of research to that of clinical evidence; from AICa3 as a patients' association, to the patients themselves with their ability to tell the disease. Speakers capable of analyzing the current situation in its many aspects and interpreting the implications and perspectives involved in facing this path and the tools available to achieve our goal.
The attention and interest with which the conference was followed, testify to the shared perception of the need for a comparison and accountability involving the world of research and the Italian Calpaine 3 Association, especially with the aim of opening positive perspectives in the coming years.
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Or you can view the speeches directly below.