EVERY DAY FOR EMMA - an Onlus (a non-profit-making social help organisation)
The association was founded in 2010 when young Emma Della Libera, born in 1998, was diagnosed with Friedreich's Ataxia, with no hope of a future.
The Association collects funds through the direct sale of four books that have been written in 4 years (to date 20,000 copies have been sold) with the support of many people.
The "CORRADO E BRUNO MARIA ZAINI" FOUNDATION and FATRO have also decided to support the association.
PROJECTS FINANCED BY THE ASSOCIATION:
1) Support for pharmacology trials on a potential drug “RG2833”, developed in America (by the Repligen Corporation, which has now become part of the American Bio Marine company), tested for the first time in the world in man in Italy, in Torino between 2012 and 2013.
Stage 1 has given encouraging results, we now await stage 2.
At the moment, there is no public funding.
2) Diagnostic studies are aimed at improving awareness, monitoring the disease and ascertaining whether any rehabilitative drugs/therapies could be effective.
The project arose in 2011, in collaboration with the “La Nostra Famiglia” Hospital Institute in Conegliano, Treviso, and the "IRCSS MEDEA" scientific research institute, entirely supported by the Association thus far.
This project is finishing the first important stage and is examining the data obtained.
This innovative study can be applied to other similar or non-similar pathologies. The person responsible for the Project is Dr. Andrea Martinuzzi, a consultant neurologist and medical-scientific researcher.
The work will be presented at the world conference on Ataxia diseases, which will take place in London in March 2015.
INCIDENCE OF THE DISEASE
Given that is a rare disease, no official data yet exist but it is estimated that 1 in 50,000 people are affected.
In Italy, there are probably around 2,000 people suffering from the condition, and therefore the incidence could be greater.
However, around 1 person in 50 is a healthy carrier.