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Miércoles 25/12/2024

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The Smith Magenis Association raises 2,300 euros in a charity event

  • This syndrome is considered a rare disease
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A local family has committed to raise funds for research into the disease

The Smith Magenis Association (ASME) organised a charity event last Friday to raise funds for research into the disease. It organised a charity cocktail dinner with good music and raffles. It is already considered a rare disease but there is still a lot to know about this syndrome that manifests itself in childhood and makes life very hard for patients and their families. 

Smith Magenis Syndrome (SMS) is a set of physical and behavioural symptoms consisting of mental retardation of varying severity together with a series of congenital anomalies. It is a so-called rare disease because it affects only 1 in 15,000 births. It is not inherited but manifests itself from birth. 

A family from Mijas with a young boy affected by this syndrome organised last Friday 16th a charity evening with raffles and raffles to raise funds for research. José Antonio Arroyo, father of the patient, said that the funds raised will be useful "because in our association, on an individual level, we surround ourselves with professionals who carry out studies on our children. A study has already been carried out on phonetics, which we have published on the website. These children are complicated, with difficult behaviour, they sleep little, they are aggressive, they self-harm...", he said about SMS. 

In total, the evening raised 2,300 euros between the drinks and all the proceeds from the various raffles and raffles. Prizes included a hamper containing a shoulder of ham (Serrano) and wine, a dress signed by Fran Gallardo and a dinner at the Cortijillo restaurant. The establishment also collaborated in the organisation of the event.

Carlos Garrido, owner of the beach bar Playa Marina, said "we organised this through José, who is our partner running the sunbeds. His brother has this disease, and we decided with one of our customers who is retired and who is dedicated to doing this kind of events and dinners to do it here, to benefit the association to provide a little help. 

Many friends and acquaintances came to support this much-loved family, such as Antonio Pedraza, a friend of the family: "We know José Antonio, Paqui and Francisco, who is a sweetheart.  We have known him for a long time and he is like family. For us it is an obligation to be here supporting the cause".

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