September marked a significant month for muscular dystrophy awareness with three important awareness days: World Duchenne Day on September 7th, Myotonic Dystrophy Awareness Day on the 15th, and Limb Girdle Muscular Dystrophy Awareness Day on September 30th.
World Duchenne Day centred around the theme of ‘breaking barriers,’ shedding light on the daily challenges faced by individuals living with Duchenne and Becker muscular dystrophy. A remarkable documentary film, released on September 7th, vividly portrays the inspiring stories of people around the world as they overcome these barriers. You can view the film here.
Myotonic Dystrophy Awareness Day aimed to capture the attention of a diverse audience, including the general public, policymakers, regulators, biopharmaceutical representatives, researchers, healthcare professionals, and anyone invested in reshaping the future of myotonic dystrophy. This was achieved through a concerted effort to raise awareness on social media, share crucial guidelines and educational materials with healthcare professionals, and provide updates on industry developments and patient registries.
The ninth Limb Girdle Muscular Dystrophy Awareness Day was dedicated to spotlighting this group of rare neuromuscular diseases that can profoundly affect individuals from childhood into adulthood. LGMD patients, their families, organizations, healthcare professionals, researchers, drug developers, public health organizations, and anyone interested in LGMD were encouraged to become “Ambassadors” of LGMD Awareness Day. Together, they worked to amplify awareness within their communities, utilizing resources and ideas available on their website.
TREAT-NMD, in collaboration with CureDuchenne, Duchenne UK, Myotonic Dystrophy Foundation, LGMD Awareness Foundation, and others, remains dedicated to raising awareness not only on these significant awareness days but throughout the year. Our common mission is to strive toward improving treatments and care for individuals living with rare neuromuscular diseases.
