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The hamlet of Tocinos Bridge hosts this Saturday June 2 the sixth edition of the Interregional Bodybuilding and Fitness Championship in favor of the association 'All with Natalia', the girl who suffered from the rare disease Niemann Pick C.
The Municipal Board of Bacons Bridge, chaired by the socialist Enrique Carrillo, has turned to the organization of this sporting event, which hopes to have a large participation and whose benefits will go precisely to the investigation of the aforementioned rare disease.
Carmen María Alarcón, president of 'Todos con Natalia', will announce during the competition the progress of the research being carried out in Alicante on the illness suffered by her daughter.
The donation to attend is 12 euros for adults and free admission for children under 10 years, although they can make their contributions, which will go to this non-profit association.
In the words of the organization and the participants, "it is important to give visibility and collaborate with associations such as 'Todos con Natalia' to raise awareness among the population, and what better way to do it than with sports and this solidarity championship in which Attendees, while enjoying it, help research rare and serious diseases such as Niemann-Pick type C ".
This edition has far exceeded the participation of athletes as well as the amount in prizes and the number of collaborating companies, cited in the poster announcer.
It will also feature the performance of humorist Diego the Notary.
'Todos con Natalia' is a non-profit association led by Carmen María Alarcón, mother of Natalia, who died on January 3, 2017 at the age of seven years victim of the Niemann Pick C disease. This organization aims to give visibility to this condition and its problems, in addition to its main mission is to promote scientific research of it.
This entity is part of the Spanish Federation of Rare Diseases (FEDER).
Currently, there is no cure treatment and it is neurodegenerative with a 100% mortality rate.
It should be noted that little Natalia was the first girl in the US to receive treatment with cyclodextrins for compassionate use and after that more sick people are receiving it.
On the other hand, Carmen María Alarcón, will voice Salvador Martinez, director of the Institute of Neurosciences of Alicante and responsible for the investigation of this disease that is taking place in his center, who has recently transferred to the association the advances in the laboratory.
And they have already developed the initial work to show that neurons can be obtained from cells derived from the pulp of the milk teeth.
From the teeth of Natalia and another child with NPC, cell lines have been obtained that show the cellular characteristics of the disease in culture.
These will serve as models to make experiments in search of treatment with cells and genes.
Currently the Institute is writing a collaboration program with foreign teams to apply gene therapy in cells with NP and mice with the disease.
Source: PSOE Murcia
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