MDA Hellas is a non-profit organization for people with Neuromuscular Disorders (NMD) in Greece, aiming to improve the quality of life of more than 1,500 affected families. Currently the organization aids in facilitating medical care for those with NMDs, offers psychological and social support, provides equipment and infrastructure to ease everyday routines, and raises public awareness through educational programs and events.
As improvements in care are enabling people with Duchenne and other NMDs to live longer, it is more important than ever to work towards improving quality of adult life. Through research MDA Hellas has found that following loss of ambulation, the topic that troubles these individuals the most is the impact of Duchenne on sex, sexuality, and intimate relationships. Many have reported feeling discomfort when discussing these topics and feel that romantic relationships are unattainable.
With the help of the STRIVE grant, MDA Hellas will produce and premiere a short film which focuses on sexuality and sex life with Duchenne. The project will feature first-hand accounts from those living with the disease and be accessible to the global Duchenne community. The film will offer realistic, unique, and much-needed insight into a topic which has long been viewed as taboo.