Cure DM is a UK Charity which supports those living with Myotonic Dystrophy, their families, and caregivers. All trustees and volunteers involved have personal experience of living with neuromuscular disease and are dedicated to improving quality of life for our loved ones. We have a focus on the often under-represented and overlooked childhood and congenital onset forms of the condition.
As treatments are improving, life expectancy is rising. This cohort is now reaching adulthood and moving from paediatric care to limited adult services, often with poor transition. We are seeing a new patient community with minimal data and clinical evidence to support the new challenges being faced.
Our aims are to:
- Facilitate a safe support group
- Signpost to accurate, disease-specific information and support
- Organise peer support events and fun activities for families
- Promote a sense of community and ease isolation.
We support research and advocate as expert patient representatives within the NHS, for clinical studies, trial design and with pharma.
Raising awareness is key, within the community and the NHS, but also through worldwide collaboration with other charities and DM focused companies. We are very proud of the work we are doing with the International Myotonic Dystrophy Awareness Day, and the connections we are making worldwide to improve the lives of those we represent.
Social media: CureDMCharity
YouTube family day video: https://www.youtube.com/watch?v=L2WQe6aspNg&t=3s