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The morning will be held in the party room Bacons Bridge, from 10:00 to 15:00 hours.

The III Matinal Motero Musical All Natalia, organized by the Association All Natalia, fighting Niemann Pick Type C (www.todosconnatalia.com), and the Municipal Board Bacons Bridge, will be held on Sunday June 5th at 10.00 pm in the Campus Events Bacons Bridge (Carril La Torre, s / n, Bacons Bridge).

The event was presented at a press conference on Wednesday June 1, by the mayor of Bacons Bridge, Enrique Carrillo, the girl's mother Natalia and president of the association All Natalia, Carmen Maria Alarcon Nicholas and the director of the Institute of neurosciences of Alicante (UMH-CSIC) and head of the research project is carried out within the research group at the Institute of neurosciences Experimental Embryology, Dr. Salvador Martinez.

The morning is organized to raise funds for research of Niemann Pick type C (with a mortality rate of 100%), suffering little Natalia.

Only about 500 cases have worldwide, and about 20 in Spain.

The case of Natalia is exceptional, because it was the first child under 5 years who was implanted an Ommaya reservoir to supply medication (Hidro-Propyl-Beta-Cyclodextrin, approved by the EMEA as an orphan drug) and the first patient Europe in this orphan drug supply.

Last March, Natalia and their closest relatives donated cells to begin that investigation.

For this occasion, the world of motorcycles will join the fight against this disease suffered the least, with an inter-territorial morning with the participation of clubs, motoclubs and biker clubs in the regions of Murcia, Valencia, Barcelona, ​​Andalusia and Castilla la Mancha, Room XXI addition to the group which made years ago a song dedicated to this struggle of Natalia and her mother.

Proceeds from the event will go towards the research project on advanced therapies (gene and cell), which is carried out within the research group in Experimental Embryology Neuroscience Institute (UMH-CSIC), called Experimental Study of Advanced Therapy in Niemann-Pick disease, captained by Salvador Martinez, director of the Institute, the pointer of Spain and one of the best in Europe in the study of the brain, which since the association has donated the amount of 10,000 euros collected in last months.

Also note that the first time in science that these two therapies are combined.

The aim of the project is to analyze the neurotrophic effect of autologous and heterologous CMM (of the same and other animal, respectively) in a mutant adult animal model for the disease Npc1.

To do this, we will put a transplant of cells that are like scavengers withdraw that crap, and besides, we will introduce a virus enzyme missing from the patient, which will prevent that crap again accumulate.

The ultimate goal is to obtain conclusive experimental data on experimental models to propose a clinical trial in patients with ENPC.

Carmen Maria Alarcon says that "from the association, we want to show our deepest gratitude to all entities that work this year: Frutos Photographers, Murcia Decoration, Eva Martinez Beauty Salon, Api Angel Alarcon, Larrosa Furniture, Hotel Eco Cenajo, Café Racso, Confectionery La Cruz, Florist Santi, Heirs Montoya, Hurtaplas Advertising, Snoopy Ice Cream Parlors, C & C Hair & Beauty, Juan Antonio Fernandez, Admin.

National Lottery No. 51, Juan Gil Bodegas Family, Schoolgirl, Marble and Granite Eurosalgar, Don Thimble, Brother Barnabas, Motos Cano, Eli's Sound, Comprarcasa Bacons Bridge, barbers ryj, Barbershop Marga, Natural Nails, Group Music Room XXI Municipal Board Bacons Bridge, clubs, motoclubs and biker clubs that participate these being: GROUP MOTERO 69, GROUP MOTERO ZETAS BIKE CLUB, GROUP MOTERO Guerrer @ S DE MURCIA, MOTO CLUB 12 + 1 GROUP MOTERO tHE AUTENTIC Guerrer @ S @ S, the Iberians OF TORREVIEJA, THE GROUP MOTEROS BRODERS, MOTERO sOLITARY GROUP, THE GROUP MOTERO PISAPIEDRAS, MOTERO AT ONE GROUP, THE POLE MOTERA PEÑA, GUARDIAN ANGELS MURCIA, GROUP moteras Merys Byker, MOTERA Peña MOTORCYCLES CARTAGENA, PEÑA MOTERA TURN FAST, PEÑA MOTERA EL PALMAR GROUP MOTERO YOUNG BIKERS, PEÑA MOTERA THE REJUNTAOS, GROUP MOTERO VIEJO, GROUP BIKER AGUILAS VERDES, MOTER @ S BARCELONA MG GROUP MOTERO RAFA AND FREE BIKER GROUP MOTERO RIDERS WIND , PEÑA MOTERA ALCONES TRAVELERS ELCHE, PEÑA MOTERA WOLVES, PEÑA MOTERA alums, PEÑA MOTERA SEPARATE PEÑA INDEPENDETMOTARD, SECTOR REBEL MURCIA, PEÑA MOTERA Searchers ALBA, CANALLAS MC MURCIA, GROUP MOTERO ROUTE, PEÑA THE MOTERUCHOS, Cosmopolitans, BUCELARIOS BIKER CLUB, MOTORKULTURE, BC RELEASED MURCIA, CLUB REBELS, MOTOCLUB GALILEOS STREAK CONTINUES PEÑA and TEAM EXUP;

all media are echoing the importance of our cause, to all the volunteers who selflessly work to take care of every detail and all those who simply will devote part of their time to attend this crucial event in the collection funds for research Niemann Pick type C started a new path, a new hope. "

Source: Agencias