World Duchenne Awareness Day highlights a year-round effort to improve adult life in Duchenne

On 7 September 2021, many activities around the world were organized on the occasion of World Duchenne Awareness Day. Awareness-raising events were hosted in many countries by organizations, companies, healthcare professionals and families. This article summarizes World Duchenne Awareness Day 2021 events involving thousands of people across the world, under the theme ‘Adult Life & Duchenne’.

The 8^th World Duchenne Awareness Day was a reminder of the importance of creating opportunities to improve the lives of adults living with Duchenne muscular dystrophy (DMD).

The World Duchenne Organization would like to thank everyone who created and participated in activities that were organized throughout the world. Elizabeth Vroom, chair: “During this extraordinary day, we were happy to see this big movement about the globe and the willingness to take action to achieve the goal of this day. Adults with Duchenne should be able to receive adequate care, have opportunities to live an independent life and to participate in society.”

Online Event on Adult Life & Duchenne

The World Duchenne Organization hosted an online event on Adult Life & Duchenne. The event gathered people from 59 countries to listen to stories and experiences surrounding DMD and adult life. The aim was not only to inspire and empower young adults with Duchenne and their families to think and plan for the future, but also call for global action to everyone involved to facilitate adults with Duchenne to live a full life including, social participation, jobs, independence and provision of optimal health care.

Apart from experts sharing their take on adult life, multiple interviews highlighted the perspective of adults living with Duchenne. In addition to care, other important aspects that were discussed included mental wellbeing, future perspective, and disability rights.

Consensus Guidelines for Adult Duchenne Care

With increased life expectancy for people living with Duchenne MD, new medical needs need to be addressed in international standards of care. The Journal of Neuromuscular Diseases published on WDAD the Consensus Guidelines for Adult Duchenne Care. Catherine Woodhead, Chief Executive of Muscular Dystrophy UK said: “I am extremely pleased that Muscular Dystrophy UK has been able to fund and support the development of the first published best practice standards of care for adults living with Duchenne muscular dystrophy. We hope that the pioneering work of Professor Ros Quinlivan and the Adult NorthStar Network will help to improve the consistency of high quality care for adults with Duchenne in the UK, but also across the world as these recommendations are adopted in other countries.”

Illuminated landmarks

As the evening set in on September 7, famous buildings, landmarks and monuments were lighting up in red to raise awareness for the rare muscle wasting disease. The Niagara Falls (Canada), Torre Glòries (Spain), and Legislatura (Chile), are only few of the many red landmarks. Next to a wave of red light, some of the initiatives included the projection of the logo, such as on the Stedelijk Museum (Netherlands).

Next Steps

The World Duchenne Organization is planning a series of webinars regarding adult life in Duchenne. Each webinar will focus on a specific care aspect. The Duchenne Care Conference that is taking place in April 2022 will be dedicated as well on Adult Life & Duchenne.