The purpose of this presentation is to show how parents of persons with congenital deafblindness can bring about positive change to the educational contexts of their children and contribute to research in the field of deafblindness. A second objective is to disseminate research findings with parents. The presentation will be carried out by a project leader (Rosemarie van den Breemer) as well as one, or two, co-researchers (e.g., Lilias Liston) who have conducted their own research, as well as, collaborated in the project- leader's research. All are parents of a child with congenital deafblindness. Traditionally, the relationship between professionals and families of persons with congenital deafblind-ness has been conceived as that of one between 'helpers' versus the 'to-be-helped' and that of 'knowledge specialists' versus 'non-knowers' respectively. Yet, this power-constellation is changing. The process of deinstitutionalization since the 1990's, has in most European countries placed families center stage in the care and education of persons with congenital deafblind-ness. Taking care of their child at home, rather than through a central institution has given families profound knowledge of their child and his/her communicative abilities. Yet, this change in epistemic status is not always recognized by professionals. Additionality, in deafblind research itself this changed status of families as not only 'needy' but also 'knowledgeable' needs more recognition. In the scant research on families of children with congenital deafblindness, family-members are typically seen as objects of study rather than participating research subjects in their own right. In this presentation, however, we draw on recent research as carried out by parents and with parents. We explore, through a discussion of our own parent-led research projects how parents seek to bring about change to the educational contexts of their child. The research discussed as well as our presentation takes a participatory research approach in which parents that are academic lead-researchers and parents that are co-researchers, cooperate.