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The aid will go to the Ainara Soldiers Association, the Orna Elroy-Stein-VWM Tel Aviv Project and people affected by the Cach Syndrome. Councilors Felipe Coello and Rebeca Pérez have been present at the event as a result of the commitment of the Consistory with Those affected by rare diseases
The Hall of Receptions of the Building Annex to the City Hall has hosted this morning the presentation of "The most valuable shirt in the world", the last campaign of solidarity launched by Soldiers of Ainara.
Councilors Rebeca Pérez and Felipe Coello have been present accompanying the family of the small girl who suffers Cach Syndrome.
On this occasion, and in preparation for the upcoming Christmas, we seek the collaboration not only of Murcia and Murcia, proposing a novel initiative that will be carried out over the next five months.
To this end, 12 different tables have been created, which will be converted into T-shirts, with 3,000 copies for each one.
The designs have been created by the international Spanish-German artist resident in Murcia Daniel Marín who has made his art available to the Ainara Soldiers Association, creating an exclusive collection of 12 paintings.
Each shirt will be linked to a tenth of the Christmas Lottery, so it could become the most valuable shirt in the world if the tenth is awarded.
In addition, well-known faces like those of Jesús Olmedo, Nerea Garmendia, Jordi Rebellón, Miguel Sayago, Salva Ortega and many more, will participate in a campaign of nominations through social networks, where the advertising spot will be launched.
The shirt has a cost of 29'95 euros, of which 20 correspond to the tenth lottery, while the rest will be used as a donation for the cause and can be purchased on the website http://lacamisetamasvaliosadelmundo.com/
Objectives of the project
With this new national project Soldiers of Ainara hopes to market 250,000 solidarity t-shirts in 5 years, while delivering one or more of the thirteen major prizes of the Christmas draw of December 22.
With the benefits obtained it seeks to spread and raise awareness of society about the problem of suffering a rare disease, neurodegenerative, without treatment, or cure, as well as trying to create a new line of gene therapy research in Spain on Cach Syndrome.
To this is added the final objective of assisting the investigation of Prof. Orna Elroy Stein, who is taking in Israel on the disease of Cach Syndrome and to the own people diagnosed by a leucoencefalopathy of the evanescent white matter, as well as to help To their families and professionals from all areas that work directly with them and try to open a line of research in Spain.
The case of Ainara
Ainara Reina was born on September 1, 2009 in the virgin hospital of Arrixaca (Murcia).
He was born healthy and evolved well as children his age and was acquiring all the skills, walking, running, talking, etc.
From the age of 4, she suffers from a syndrome of infantile ataxia with central hypomyelinization, known as Cach's syndrome, a neurodegenerative disease classified as rare that affects the cells of the central nervous system, specifically the myelin sheath, whereby neurotransmission becomes engorged or Blocks and that for the moment has no treatment, nor cure, causing a sudden and severe deterioration
CACH syndrome is caused by mutations of one of the 5 subunits of the translation initiation factor F2B (eukaryotic mutation related to leukodystrophies).
Mutations in EIF2B1, EIF2B2, EIF2B3, EIF2B4, and EIF2B5 have been found in more than 95% of patients. It is inherited in autosomal recessive form.
The most common phenotype appears between the year and five years of age.
Source: Ayuntamiento de Murcia
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