Jesus is five years old and suffers from Myoclonus-dystonia, a movement disorder that typically affects the neck, torso, and arms and causes serious psychological problems. Myoclonus-dystonia is a rare disease that affects a person of half a million, most of them children. Little is known about Myoclonus-dystonia and that is why the parents of Jesus, Fernando and the Navy, created ALUDME (Association of the fight against Dystonia), a social project with a clear objective: to raise funds for research. Vall d'Hebron, VHIR and ALUDME have signed a three-way agreement that goes to a translational research project to learn more about this genetic. "We deposit all our confidence to the Dra. Belén Pérez and his team of researchers of the pediatric neurology of the VHIR. We are very grateful for the relationship with Vall d'Hebron, the professional treatment and personal involvement, his listening and the help in the investigation of Myoclonus-dystonia. We feel we have made an important step ", affirms the Navy, the mother of Jesus.The ALUDME Association donates 45,000 euros in the year that come out of donations from several actions. "Videos, plays, concerts" have been made, they explain the parents of the child. A tale has also been made, La Historia de Potami, which brings out the Myoclonus-dystonia and makes it easier for children who suffer to experience it. "We are happy to be able to express and receive positive feedback on our actions", the mother adds.Thanks to the donation of ALUDME, the professionals at Vall d'Hebron Hospital have been able to make different advances. "We now know that Myoclonus-dystonia is one of the most frequent causes of genetic dystonia in children. We have been able to fully describe the illness, understand it and know how it begins and develops throughout childhood, and although there is still no therapy able to modify the course of the disease, we have shown that surgery Deep brain stimulation is effective in controlling involuntary movements in the most severe patients", says Dr. Belén Pérez-Dueñas, responsible for the case of Jesús and principal researcher of pediatric neurology of the VHIR. The Dra. Pérez-Dueñas also stressed the importance of associations such as ALUDME: "Associations such as ALUDME help to improve the knowledge of rare diseases among patients and relatives affected and are the engine of their medical research. We can say that in the medium term his work also contributes to improving the quality of care of patients. "The director of the VHIR, Dr. Joan Comella, also showed his complicity and gratitude for the agreement with ALUDME. "From Vall d'Hebron we greatly appreciate this treatment and we are delighted that you do it in our house." And add "You are in very good hands. Your enthusiasm and professionalism is what makes things go well."