The Thematic Area of Rare Diseases (CIBERER) is created to serve as a reference, coordinate and promote research on rare diseases in Spain and consists of 62 research groups linked to 29 consortium institutions. This year, it has convened several financial aids for Cooperative and Complementary Intramural Actions 2017 (ACCI) to which 30 projects have been presented, 10 of which have been awarded.
One of those 10 that will receive support will be a study about our disease, specifically through the use of the innovative and revolutionary technique of CRISPR / Cas9, seeking to repair the genetic mutation that causes us members of the Conquistando Escalones Association, Limb-girdle Muscular Dystrophy 1F. This project will be carried out by three of the six research groups that already work or have recently worked on studies of our disease, forming part of the medical alliance that was formed for that purpose. Specifically, Dr. Juan Vílchez Padilla of the La Fe Research Institute of Valencia heads it, with the collaboration of Dr. Rafael Vázquez Manrique of the same institution and Dr. Ramón Martí Seves of the Vall d’Hebron Institute of Research of Barcelona.
As we have announced in previous communications, the Conquistando Escalones Association has paid € 150,000 in the last 2 years to cover the costs of medical research seeking a cure for Limb-girdle Muscular Dystrophy 1F, but that can also help to save millions, given that the genetic mutation that causes the disease prevents HIV infection. Currently before the end of 2018 we need to gather € 220,000, for which the successful grant of € 49,000 is a great boost and help, which gives us strength to continue working and not stop making events and campaigns continuously to get the rest, as well as what will continue to be necessary in the coming years.
We want to congratulate Dr. Vilchez, Dr. Vazquez and Dr. Martin for their work and for having obtained this important help.
You can read and download HERE the official note sent to the media from the La Fe Research Institute of Valencia.