Actor Antonio Velazquez and Muay Thai world champion, Yohanna Alonso, contributed to raise awareness for EB condition

22 May, 2019

Dozens of people joined the renowned Spanish actor and the current combat sport world champion, to climb the 1200 m to the top of La Concha Mountain in aid of the Butterfly Children’s Charity.  The event was the 4th of its kind and raised € 8000:  There are over 500 people affected by EB in Spain and these events are fundamental for raising awareness and essential funding needed to support children with EB.

To celebrate this amazing event one of our members with EB, Adrian, along with quadruple amputee, Sarah Almagro, were treated to a ride in a helicopter by the local Guardia Civil, who flew them to the top of the mountain.

Local sports councillor Javier Merida attended the press conference where Nieves Montero, President of the Butterfly Children’s Charity used the opportunity to give thanks for the amazing support received by all.

Many have now climbed to the top of this impressive mountain to take photos from the bench installed by the local fire brigade in 2016, helping to spread the word through social media worldwide.  The support from celebrities has been overwhelming and we are delighted to have been joined by so many famous faces including the comedian Manu Sanchez, the retired footballer Ruud Van Nistelrooy and the dancer Rafael Amargo.  This year we give thanks to the support received from the Global Gift foundation, the El Carmen residence and to all of the people who kindly joined the cause on line at

These events have raised over €19 000 for the Butterfly Children’s charity:  Funding which allows us to continue with our mission to improve the quality of life for people with EB.

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