A new star is born in Italy

Daniele Oliveri is the President of a new patient organisation in Italy called FIMM.  His son Francesco is diagnosed with myotubular myopathy.  Below Daniele writes about his reasons for founding FIMM and what he hopes the organisation will achieve in the future.

Daniele and son Francesco.

Daniele and son Francesco.

The first time I thought that it could be useful create a patients association, was a couple of years after my son Francesco’s birth, when I met for the first time some other European patients associations, joining their families conferences.

At least four years have been passed from that period and now, finally, I’m really proud to announce that the first Italian patients organisation totally focused on myotubular and centronuclear myopathies has been officially founded.

Mare, Francesco and Mattia.

Mare, Francesco and Mattia.

Our name is FIMM, is an acronym of Famiglia Italiana Miopatia Miotubulare e Centronucleare (myotubular and centronuclear myopathies Italian family), our logo contains obviously the Italian flag colours and our catchphrase is ‘mano nella mano verso la cura’ (‘let me leave it’ in Italian).

We are just born and we have to grow up and learn but our inner motivation is really strong and we are ready to learn even from other patients organisations experiences.

Our mission is to increase MTM/CNM disease ​awareness, in order to speed up the diagnosis and to improve the disease management, create a patients families network in order to give help, share information and experiences with each other and in general share the acquired knowledge. Another important target is to support research to find a  possible cure.

We will find the inspiration and the strength to go ahead from our patients, and we will work all together saying always aloud “mano nella mano verso la cura”.

FIMM logo

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