Author - Asociacion MEF2C

Coming soon … CD of solidary carols MEF2C

Christmas is coming and with it many solidarity projects. Today we anticipate one that brings us special excitement: a carol CD made with great love by wonderful people who have wanted to contribute their bit to our cause in such a beautiful way. We will have the CDs in our hands very soon, we will keep you posted with all the details! #IWantToBeTheFourthWiseMan #WeLookForwardTogether #TheImpossibleIsJustMoreDemanding

Alberte López Muñiz joins the challenge 100×100 with the MEF2C

Today we introduce with great enthusiasm Alberte López Muñiz, from the Breogan Association Nove Ondas, who has joined the challenge 100x100 with the MEF2C.   Alberte already showed us his support in the challenge of the 1000 bracelets that Salva Arco Frias promoted a few months ago and this time has not hesitated to be one of the 100 participants of this new and so hopeful challenge so. Thank you very much for your great support and solidarity!   #100x100challengeMEF2C #challenge96 #WeLookForwardTogether #TheImpossibleIsJustMoreDemanding

Dr Lipton publishes the first article with a treatment for MEF2C Syndrome

s41467-017-01563-8 November 14 has been one of the most special days so far, for those of us who are part of this Association as well as for all children suffering from MEF2C Syndrome and their families. Dr. Lipton has published the first article about the drug tested in mice to treat the illness of our little ones. The drug is called "NitroSynapsin" and the results published in the prestigious journal "Nature Communications" show its great efficiency in the brains of mice...

On Saturday it will be held “VII Dance Meeting”

As you know, on February 28 it is celebrated the world rare disease day, this is the reason why we will perform and be present at a series of events over the coming week. We will enjoy the first of them this Saturday in the "VII Dance Meeting" organized by La Nova Escola, in which a solidarity raffle will take place for the benefit of our Association. Thanks to the great work of Enri Gual and Maria Pilar Ortiz Fornas,...

Interview with Celia’s parents in TV Mediterráneo

Very pleased to be able to give visibility to our cause on television. Today at 1:15 pm, Xavier Blasco's interview with Amanda and Jesús, Celia's parents, is re-broadcast on his Crono program on TV Mediterráneo. Spreading is very important for these minority diseases. Thank you to all of you who are helping us to reach more people and to be closer and closer to our goal: a treatment for MEF2C syndrome. We are still fighting!   MEF2C Association We look forward together.

Divertipark Argés becomes a new solidarity selling point

Today we are very excited to announce that for some time now, in the town of Toledo, where our little Laura was born, we can also buy our solidarity bracelets. We thank the playground Divertipark Argés for wanting to collaborate with this hopeful cause, becoming a new selling point. We know that to achieve our goal it is necessary the help of many people, so news like this fill us with optimism and encourage us to keep fighting even harder. Together...

Bienhumorados, a solidarity conference

Today we want to announce another of the events that will take place within the week of awareness about rare diseases. Next Thursday, March 2 at 7:30 pm at the Teatre Raval in Castellón, you can attend a very original and fun conference organized by the great Sergio Ayala Climent, who on this occasion has wanted to be in solidarity with our cause. The title is "BIENHUMORADOS" (“Good-tempered”) and it will deal with humour, positivism and hype at workplace....

Guillem continues to make great progress with the help of Pocoyó

Guillem is a fan of Pocoyo and, stimulated by this cartoon, he has made great progress. On this occasion the brave little one has managed to move by himself for the first time. Silvia, the mother of Guillem, sent a video to the creator of Pocoyó with his advances and he has not hesitated to show his solidarity by sending this drawing dedicated to him. Any advance of these children is a great joy for us and behind it there are...

A very intense and exciting weekend

Good evening! During this last weekend we have participated in different activities, in which we have had the opportunity to make our cause known and we have noticed the great support and collaboration of people. As you know, our goal is to raise funds for Dr Lipton's research in California, because as this year's World Rare Disease Day motto says, "Research is our Hope”. On Saturday morning, the "Colla Altrahuet" showed that party and solidarity also walk hand in hand....

5 days left for the Charity Festival for MEF2C Syndrome Research

Good evening! After an intense weekend when people have shown us great support and affection, we began a week on which we have placed lots of hope. This Thursday at 19:30 it will take place in the Teatre Raval of Castellón the fun conference of Sergio Ayala on humour, positivism and good work at workplace. And on Saturday, starting at 4:00 pm in the Pergola, we will organize the MEF2C Syndrome Research Charity Festival, in which, as you know, the...