Founded in 2017, the Associacao Cearense de Distrofias Musculares (ACDM) provides guidance and access to therapies for people living with Duchenne muscular dystrophy in north and northeast Brazil. These regions have a higher prevalence of genetic disorders, and of Duchenne in particular, compared to the rest of the country1.
Using the STRIVE grant, ACDM plans to launch Project Facilitate, which aims to ensure students with Duchenne have their needs met while in school. This project will focus on promoting greater school inclusion, facilitating the formal learning process for students with Duchenne, and offering these individuals greater autonomy and opportunities to develop academically and socially.
With neuropsychological assessments, ACDM will provide students with Duchenne individualized tasks and objectives. This bespoke approach acknowledges the unique needs of each participant and will aim to provide students with greater career prospects, more meaningful social interactions and relationships, and improved literary and academic performance.
Midway through 2023, ACDM is in the 5th stage of the project, the neuropsychological assessment of the participating patients. In parallel, they are performing some of the proposed actions for cognitive stimulation, such as board games for group integration. ACDM is eager to progress to the next step, which is individual cognitive stimulation based on the deficits identified in the evaluation process and the psychoeducation work in the schools of the project participants. The organization is looking forward to continuing its work to further help the Duchenne community.
[1] TEIXEIRA et al. Epidemiologia da Distrofia Muscular de Duchenne no Ceará [Epidemiology of Duchenne Muscular Dystrophy in Ceará]. Vol 6. N.9 (2020).