This is the challenge that Friulian cyclist Omar Muzzo is about to take on to support the construction of a hospital center for adults with cystinosis, a rare genetic disease belonging to the group of diseases known as inborn errors of metabolism.
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A beneficial journey of more than 1,100 kilometers, against renal cystinosis. This is the challenge that Friulian cyclist Omar Muzzo is about to take on, to support the construction of a hospital center for adults with cystinosis, a rare genetic disease belonging to the group of diseases known as inborn errors of metabolism. .
Departure August 24 from Aquileia
The charity initiative, which departs from Aquileia, in Friuli Venezia Giulia, and arrives in Matera, will see Muzzo embark on a long 4-day journey, called Bike4life, on his bike from August 24 to 27. The ride consists of four stages: from Aquileia to Florence on Wednesday 24 August, from Florence to Rome on Thursday 25, from Rome to Naples on Friday 26 and from Naples to Matera on Saturday 27. The challenge starts at midnight on August 23 from Piazza della Basilica, in Aquileia, at the end of an inaugural ceremony organized for the occasion. The rider from Friuli rides alone, but is assisted during the course. Anyone wishing to support him, even for just a few miles, can contact the organizers of the initiative on the event’s Facebook page or email bike4lifeevento@gmail.com.
2,200 people worldwide are affected by it
As explained on the portal of Bambino Gesù’s Children’s Hospital, cystinosis is a genetic disease that is currently untreated and is caused by changes in the CTNS gene that contains the information the cell needs to produce cystinosine, a protein that amino acid cystine can carry. In the absence of cystinosine, there is an accumulation of cystine in the body cells, which damages cell units. The disease initially affects the kidneys and eyes and later also affects the thyroid, liver, muscles and pancreas, white blood cells and the central nervous system. It affects 2,200 people worldwide, 70 of which are in Italy. Currently, the only weapon is administering therapies that can slow its progress. In Italy there are several centers specializing in the treatment of children suffering from this pathology, but there is no specialized center that cares for adult patients.
“Our dream is above all to contribute to the realization of a transition center from pediatric patient to adult patient. Upon reaching the age of majority, patients with cystinosis are in fact followed as normal patients instead of receiving that special attention both from a diagnostic and therapeutic point of view that the disease would require,” said Laura Morocutti, president of the Italian Cystinosis Association.
Source: TG 24 Sky
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