ImpulsaT is the official Spanish non-profit association representing people living with LAMA2-CMD.
We are a non-profit association created in 2017 by the family of Júlia and Élia, two girls living with the disease. Currently, ImpulsaT is made up of relatives, doctors, scientists and people who live with this disease.
ImpulsaT was created with the goal of finding the cure for MDC1A. For this reason, we work towards achieving the following goals:
1. PROMOTING AND CONTRIBUTING TO MEDICAL RESEARCH PROJECTS
Through fundraising efforts we promote and maintain medical research to improve the treatment and cure of LAMA2-CMD.
Since the creation of ImpulsaT we have managed to open two investigations in Spain. These are taking place at the Research Institute in La Vall d’Hebron Hospital and at Pompeu Fabra University, both in Barcelona, Spain. More information on these investigations can be found here.
Through the ImpulsaT scientific committee we also work on connecting research teams in order to encourage them to collaborate and progress the research around this illness.
2. CREATING A SPANISH PATIENT REGISTRY AND SUPPORT NET
We promote the communication and collaboration among people suffering from this disease and the various national and international organisations to accelerate research, treatment development and increase the knowledge about the disease.
We have also created the national register of people who suffer from LAMA2-CMD with an international registration form model which facilitates the compilation of medical information and enables further clinical research.
3. RAISE AWARENESS
We organise scientific and medical symposiums, family meetings and community events. We also create and distribute content to educate people about LAMA2-CMD and make them aware of the consequences of this illness.
We are also participating and creating a network of European associations with the same objectives as ImpulsaT, with the hope of more rapidly advancing investigations of this disease.