TRANSPARENCY IN THE SEARCH FOR OUR ONLY GOAL: A TREATMENT FOR MEF2C SYNDROMEAsociacion MEF2C
As you know, the latest news daily speak about Nadia Nerea´s case, which unfortunately has had several victims. On the one hand, all the benefactors who became sensitive with the shocking story of the little girl and her family. On the other hand, associations of rare diseases such as ours that daily struggle to improve the quality of life of those affected. And of course, the most harmed person is little Nadia, who, unaware of all the problems, could be left homeless.
As parents and representatives of an association of children with a rare pathology, we are concerned about the effects this case is having on society. That is why we would like to emphasize that, as our statutes (signed in A, F & S Notaries) well indicate, everything we collect goes entirely to the investigation of the MEF2C Syndrome, carried out by Dr. Stuart Lipton in San Diego, California ). We want to be totally transparent, so we do our best to let you know every movement and activity we carry out, as well as every transfer. Now more than ever, after seeing with our own eyes the results of this research, we can ensure that the funds raised are being well invested. We also try, at any time, to seek the support from the administrations as well as the research centers.
We want to thank some media for showing us as an example of transparent association these days. Thanks to the newspapers El Mundo and Levante EMV for the news published, and also to Antena 3 News to show our image on their news.
We look forward together