When the Associacao Cearense de Distrofias Musculares (ACDM) was founded in 2017 they had a mission; to provide access to therapies and to share parental guidance on muscular dystrophies, including Duchenne, to those affected in the north and northeast regions of Brazil. These regions have a higher prevalence of genetic disorders, and of Duchenne in particular, compared to the rest of the country1.
Research has suggested a link between Duchenne diagnoses and brain disorders, which impact cognitive abilities and the learning process of affected individuals2. This, alongside the difficulties caused by physical disability, mean that far too often students with Duchenne are not having their needs met in school.
Using funding from the STRIVE grant, ACDM will be launching PROJECT FACILIATE. This project will focus on promoting greater school inclusion, facilitating the formal learning process for students with Duchenne, and offering participating individuals greater autonomy and opportunities to develop academically and socially.
Through the use of 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.
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1TEIXEIRA et al. Epidemiologia da Distrofia Muscular de Duchenne no Ceará [Epidemiology of Duchenne Muscular Dystrophy in Ceará]. Vol 6. N.9 (2020). https://doi.org/10.34117/bjdv6n9-416
2ZACHI, Elaine. oral Thesis. Avaliação Neuropsicológica de Pacientes com Distrofia Muscular de Duchenne [Neuropsychological Evaluation of Patients with Duchenne Muscular Dystrophy]. Catalogo USP, São Paulo, 2009. 10.11606/T.47.2009.tde- 22022010-10011777
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