We are DMD Pathfinders!
DMD Pathfinders is a user-led charity (reg. no. 1155884) which promotes choice and control and quality of life for teenagers and adults with Duchenne Muscular Dystrophy in the UK. It campaigns for improved standards of health and social care and provides advice, guidance and support to teenagers and adults with Duchenne Muscular Dystrophy on issues such as independent living, housing, employment and welfare rights.
Aims and Objectives
- To provide a voice for adults living with DMD.
- To provide a forum for adults living with DMD to share experiences, ideas and opinions in complete confidence.
- To provide information, advice and peer support to adults living with DMD.
- To identify, promote, and develop best practice, innovative treatments and technologies for adults living with DMD.
- To campaign and influence treatments for adults living with DMD within health and local authorities, government, relevant professionals, disability organisations and charities.
- To work with health and local authorities, government, disability organisations and charities in improving care, support and services for adults living with DMD.
- To increase awareness of adults living with DMD.
About Duchenne Muscular Dystrophy
Duchenne is a fatal genetic muscle-wasting condition that affects 1 in 3500 births and currently there is no cure. There are an estimated 500 people in the UK aged over 18 with Duchenne and many more with Duchenne-like types of dystrophy.
In later stages, Duchenne leads to almost total paralysis, reliance on a ventilator to breathe and a need for round-the-clock-care.
Living longer, healthier fulfilling lives
Due to advances in medical care in the last few decades we are now living with into our 20’s,30’s and 40’s, with extensive health, care and social needs.
We are an unforeseen generation, since we were not expected to still be alive and as a consequence organisations and agencies that were originally created to advise and support our parents/carers have been slow to respond to our needs.