Grupo DIA y FEDER contra las enfermedades raras

A journey around Spain for those who can’t

Stocking up on the necessary provisions, putting on their shoes and going on the road to cover more than 3,000 kilometres around all of Spain in a duathlon, to speak up for and make people listen to all those who are not able to do so themselves. Under these basic premises, Marcos and Minerva decided to set up a charity project that has just seen the conclusion of its second edition, and which has managed to bring the message of awareness to more than 300 Spanish towns and villages. A message supported by an example of overcoming and progress.

Because the two heroes of this story are blind – total blindness in the case of Minerva and partial blindness in the case of Marcos. This complex situation has not stopped them from advancing and completing their great challenge, accompanied by the Spanish Federation for Rare Diseases (FEDER), ONCE (Spanish Institute for the Blind) and DIA Group, which provides food and drink at the end of the stages.

Behind all of this is the daily effort and fight of the more than three million people in Spain, mostly children, who suffer from a rare disease. For all of these persons, Marcos and Minerva have travelled the peninsula spreading awareness, throughout the population at each stage, of their problems and collecting funds for research into these diseases, which in the majority of cases is not addressed by research.

Cities such as Madrid, Barcelona, Albacete, Granada, Seville, Caceres, Salamanca, Zamora, Lugo, La Coruña, Vitoria, Logroño, Pamplona or Huesca have been witnesses to this pioneering challenge and have been able to gain first-hand knowledge of the reality of those who live with a disease of low prevalence.

The FEDER foundation gives annual grants toward research and all the money collected by the two athletes will be used for the same purpose. “This is much more than a sporting challenge, it is a journey of solidarity” explain Marcos and Minerva, who are already thinking about next year’s challenge.

DIA Group and FEDER have closely collaborated for more than six years, which has resulted in different projects based on support and awareness of the fight against rare diseases. Among the actions implemented by the federation and supported by DIA Group is the classic Race for Hope, which is held every year in Madrid and Barcelona, and which, thanks to the collaboration and high level of participation, has managed to improve the quality of life of those who live with these diseases in Spain and which promote care and research.

FEDER, through its foundation and with the firm commitment to promoting, supporting and strengthening the research into these diseases, has as its main objective to contribute towards enabling these associations to obtain funds with which to initiate or continue research projects; “principal route to advance, maintain hope and facilitate the future of people with low-prevalence diseases”, as expressed by Alba Ancochea, Director of the federation and its foundation.

 

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