Today it is celebrated the World Rare Disease Day, among which the syndrome our children suffer. These diseases affect 7% of the world population, there are about 7,000 described and of them 500 are the majority of cases and of the rest there are only dozens of patients of each one. In the case of the MEF2C Syndrome, there are currently about 70 cases described in the world, 4 in Spain. The average diagnostic time is about 5 years, and...
Castellón Penitentiary II from the ACTUA Project and the CFPA Pla del Puig wanted to do their bit to help and collaborate with our cause. They have been elaborating with great enthusiasm several products for our stand of next Saturday event. In addition, they have designed this beautiful poster. Thanks to Mireia, Dani and the staff of the school for this beautiful initiative and the Penitentiary Center for making it possible. We are very grateful for all the collaboration and...
Today we announce that this Saturday, in the Charity Festival that we organize for the Rare Disease Day in the Pergola of Castellón, literature will also have prominence. We want to thank the writer Javier García Martínez for donating us 18 copies of his very interesting novel "Siroco" for this event. We inform to all the interested people that you can buy them in our solidarity stand. It is a pleasure to have people as committed as Javier, since right...
Today we have got up with a smile in our mouth and full of positivism after the conference “Good-tempered” of Sergio Ayala Climent last night. We spent a very pleasant afternoon full of laughter and solidarity, and moreover, we left with a lot of useful advice for our day to day life. Thanks to all the attendees for your great support and to all those who made this conference so funny and original. We are very excited by the affection...
This is already on! The Pergola of Castellón is ready! We are very excited about the preparations for this afternoon, we are looking forward to spending a very special day with you. This will be the approximate schedule of the activities and performances: 16: 00h: Opening of doors (free entrance). - 16: 00-18: 00h: Workshops for children (balloons, face make up, capoeira ...) - 18: 00h: Show of Mago Llaves (a wizard) - 19: 00h: Performance of Iabadabadú musical group. - 8:15 p.m.Solidarity...
After yesterday we can only say THANKS. Thanks to all the volunteers who helped us with the preparations to be able to get everything out, without them it would not have been possible. Thanks to the city councilman Jose Luis López Ibáñez and to the City Council of Castelló de la Plana for giving up the venue. Thanks to the entities and companies that made so many contributions for the raffle, thanks to the Grup Scout Els Millars for the...
Last Saturday morning we had the pleasure of being present at the open day of San Cristóbal School. Thank you for giving us the opportunity to spread our cause on such an important day for you. We felt great affection and support from all the attendees. Thank you for so much solidarity! MEF2C Association We look forward together.
Our little ones enjoy festivals, Guillem las Fallas and Celia la Magdalena. They love the festive atmosphere, the music and even the fireworks. That makes us live the festivals with much more enthusiasm. Guillem has enjoyed the Fallas of Valencia with his family, and Celia yesterday fulfilled the tradition of going to the traditional pilgrimage and today has participated in the Children's Parade with her sisters. They have had a great time listening to the music! MEF2C Association We look forward together
Last night was very special because Celia had the opportunity to spend a little time with Antonio Orozco. As we told you a few days ago, his music has been leaving a mark on our little girl helping her make great progress as taking her first steps. It was very exciting to see how Celia kept looking at him with that smile of happiness, something that in these small children is complicated because they have a hard time keeping their...
Today we want to tell you an initiative we are very excited about. The Breogan Basketball Club of our friend Salva Arco, a player we had the pleasure of personally meeting when his team played against TAU Castelló, has proposed the challenge of selling 1,000 solidarity MEF2C bracelets during next Friday's derby, which will face in Lugo the local Breogan and the Coruña Básquet. The sensitivity Salva has shown to our cause from the first moment he heard about it...
