Join the fight!
Together we can improve the quality of life and boost independence for people living with muscle disease. We have found that:
- three out of four carers lack access to respite care
- over 50% of patients have no access to a specialist neuromuscular consultant
- survival rates for boys with Duchenne muscular dystrophy is 18 years in the South West, compared to 28 years in the North East.
- vital services, such as physiotherapy, are often withdrawn by the age of 19
- over 50% of patients do not see a physiotherapist
- 75% of families experience financial hardship
As part of the Building on the Foundations campaign, we have set up regional campaigning Muscle Groups involving families, supporters and healthcare professionals.
The South West Muscle Group and West Midlands Muscle Group have already been instrumental in securing NHS investment and service improvements for local people living with muscle disease.
Regional Muscle Group meetings are an opportunity for you to share your experiences with other families living with muscle disease and to develop local campaigns on the key issues.
Find out about the Muscle Group in your region and contact the Campaigns Team to find out about your regional Muscle Group:
020 7803 4847
campaigns@muscular-dystrophy.org
Trailblazers
Are you between the ages of 16 and 30 and want to fight for the rights of young people with muscle disease?
Visit the Trailblazers website and find out more about getting involved in the campaigns of the network and joining your regional Trailblazers group.
