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Motion · S6M-14353 · 5 Sep 2024

World Duchenne Awareness Day, 7 September

Lodged by Christine Grahame Standard Motion 27 supporters

The motion

That the Parliament recognises that 7 September 2024 is World Duchenne Awareness Day, which will see the charity, Duchenne UK, launching its report, Transforming our rare reality, which sets out what a small community of families in the UK has done for themselves to get better care for their children after being diagnosed with Duchenne muscular dystrophy (DMD), a muscle wasting disease; understands that there are approximately 2,500 people in the UK living with DMD, which is a genetic disease that causes muscle weakness and wasting, typically diagnosed in early childhood with people with DMD currently living into their 20s and 30s on average; notes that Duchenne UK is a charity that was set up in 2012 by Emily Reuben OBE and Alex Johnson OBE following both of their sons being diagnosed with DMD, and that it has raised more than £27 million since its launch to fund clinical trials and research, set up DMD Care UK, which is a national care programme for patients with DMD, and develop innovative technologies to support the independence of people with DMD; thanks all those involved in advancing research and support for those living with DMD, and hopes to see further positive advances in the future.

Supporters (27)

Source: the Scottish Parliament motions and amendments record.