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Aurora magazine

At the university to study their rare disease

The twenty-one Emma attends the faculty of Molecular Sciences in Trento, placed on the social photos taken in the laboratory, dreams of becoming a researcher. A story like so many, it was not that Emma suffers from Friedreich's ataxia and was written to the university just to study it. The affair has moved an entrepreneur in the area, convincing him to donate 336 thousand euros for research.

There are no definitive therapies for Friedreich's ataxia and, over time, those who suffer from it lose the ability to move independently. Emma has been aware of this since she was 12, the age in which she was diagnosed with the disease. Nevertheless, the girl did not give up and put herself on the line. She enrolled at the Integrated Biology Center of the University of Trento, so as to find new treatments for herself and for those who share her fate.

The story of Emma has moved the entrepreneur Gino Del Bon, whose granddaughter suffers from Cornelia de Lange Syndrome. Man knows well the difficulties of those suffering from a rare disease: he could not stay with his hands in his hands. For this reason, he joined the crowfunding campaign on the genomic corrector launched by the university, personally donating 336 thousand euros. Even the family of Emma has decided to get involved.

The parents of the girl have created the association "Every day for Emma", forging a collaboration with the association "For the smile of Ilaria Montebruno". Together they donated € 345,000 to the University of Trento, to study Friedreich's ataxia and other rare genetic diseases. To these were added € 112 thousand donated by many Trentino and people from all over Italy.

Source: corriere.i