DMD Pathfinders is a user-led charity, which promotes choice, 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 (DMD) on issues such as independent living, housing, employment and welfare rights.
DMD 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 DMD and many more with DMD-like types of dystrophy. In later stages, DMD leads to almost total paralysis, reliance on a ventilator to breathe and a need for 24/7 care and support.
Due to advances in medical care in the last few decades we are now living 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.
Our aims and objectives are:
DMD Pathfinders was co-founded in 2013 by Mark Chapman and Jon Hastie, two adults living with DMD, who sought to raise the profile of adults with DMD and meet their needs for reliable information, peer support and opportunities to live fulfilling lives.
DMD Pathfinders has since gone from strength to strength, producing a number of information guides, delivering conference sessions and completing a lottery-funded mentoring project for young adults. In 2016 DMD Pathfinders employed its first member of staff.
We are currently developing project proposals for ongoing work to support young teenagers and adults through transition, as well as projects to tackle social isolation. We are also producing information guides, videos and lobbying the pharmaceutical industry to ensure research into new treatments benefits adults living with DMD.