As part of our vision of a world where lives are no longer limited by Duchenne muscular dystrophy, one of our key objectives is campaigning for equality for disability.
Campaigning has become ever increasingly important as restrictions on funding limit a whole range of areas for those who live with Duchenne – be it the funding of new treatments, provision of adequate wheelchairs, or more basic areas such as access to buildings or suitable toilets. The almost total focus on Brexit has also meant an ever increasing need to make the voices of our community heard in government by decision makers.
Where’s my chair?
Action Duchenne has continued to actively drive forward our campaigning work on wheelchairs. We are grateful to Peter Duffy for the work he did on setting this up and working with the community to gather evidence of the shortcomings of the system. We are now in the final stages consulting with clinical experts before finalising and publishing our report which will be used to challenge government and the NHS to find a better way of managing and delivering the provision of wheelchairs for people living with Duchenne.
Raxone
Two years ago, Raxone was made available to some people living with Duchenne muscular dystrophy through an Early Access to Medicines scheme. This year we’ve been working closely with fellow charities to ensure everybody living with Duchenne who is eligible can gain access to Raxone if they wish. We jointly published a family guide explaining how the Early Access to Medicines scheme works and who is eligible to take Raxone.
A&E project
Our work on unplanned and unexpected admissions to A&E of people living with Duchenne muscular dystrophy continues. We are working with the NHS and professional standards bodies with the aim of improving the standards of record keeping so that medical staff have better information available to them with the ultimate aim of improving outcomes following unplanned admissions.
This is a long and ongoing piece of work that Simon Dadd started as a Duchenne parent before he joined as a trustee.
A big thank you
We give thanks to many of our supporters across the country who are doing marvellous work to support the charity and help the community. One supporter in particular is our Advocacy Officer in Scotland, John Miller, who is a Grandfather of Lee who lives with Duchenne muscular dystrophy.
Join our campaigns
If you would like to get in touch or support any of our campaigns, please email simon@actionduchenne.org.
Thank you for helping us build a community
