Bone health is often overlooked in adults living with Duchenne muscular dystrophy (DMD) – but it’s essential. We had the launch of updated bone health guidance for adults with Duchenne in an online webinar that took place on the 13th January (watch the recording here). The launch was a great success! Read and watch the guidance animations on the Pathfinders Neuromuscular Alliance YouTube page website.

Pathfinders are delighted to announce the launch of a new research project in 2026 called ‘Sex Matters in DMD‘ funded by the Duchenne Parent Project (DPP NL) in partnership with Dr Janet Hoskin from the University of East London, Dr Claire Wood from the University of Newcastle, and Professor Charlotte Hamburg from the National Rehabilitation Center for Neuromuscular Diseases and Aarhus University, Denmark. 

Our CEO, Jon Hastie, recently attended the Duchenne Care UK Annual Meeting, and gave his lived experience regarding the project.

The project will talk to adults and young people with DMD, parents/ carers, and health professionals in the UK and Denmark, to come to a consensus about what good sexual health looks like in DMD. This is an area that is often ignored for disabled people and those with chronic conditions, and we are excited that this project can highlight the many issues regarding sexual health and give opportunities to discuss these. We will be recruiting adults with DMD, parents, and professionals over the coming months, if you are interested for more information or want to take part please email j.hoskin@uel.ac.uk

The Wellcome Anti-Ableist Research Cultures (WAARC) project is a two-year initiative which brings together researchers of all kinds (early career, academic, postgraduate, etc.) to challenge ableist research culture practices. The Wellcome Trust has funded Sheffield University to spearhead the project, looking at how experiences for disabled researchers can be improved.

The Pathfinders Research Team is currently working with Sheffield University by recommending anti-ableist guidelines for academic institutions to follow. As part of WAARC, Pathfinders hopes to help create guidelines which diminish ableism in academic environments and support disabled staff to do their best work.

The Pathfinders research team are currently working on a project titled: ‘Enhancing social care for young adults with neuromuscular conditions as a preventative approach’. This project is in collaboration with different organisations, groups and individuals, including Northumbria University and the Pathfinders Research Advisory Group (PRAG), all made up of individuals representing the neuromuscular community. 

The PRAG and Research Team are currently taking part in workshops to learn about and implement Experience-Based Co-design (EBCD) research and are in the process of recruitment and conducting interviews for the first stage of the project. As part of this we will be putting together a catalyst video for the project. Sam and Benjamin met with Janet Hoskin and George Peat on the 22nd January at The University of East London to do some filming with Inertia Creative.

Pathfinders have been working in collaboration with The University of Sheffield on a project called Cripping Breath which is  a five-year co-produced programme of research, funded by the Wellcome Trust. We are currently working on one of the areas of this research known as Everyday Stories of Breathing and Ventilation. 

This project centres the lives of people who have had their lives saved and sustained by ventilatory medical technologies. Via co-design and exploration, led by disabled, chronically ill and ventilated people, this project highlights and recognises that these growing communities of people and patients are often absent from contemporary social theorisations of respiration and ventilation, and we have much to learn from experiences of ventilation.

Centring arts-informed, archival, narrative and ethnographic approaches, this project develops Crip perspectives – forms of knowledge production that emerge from lived experiences of disability and chronic illness. Artists-in-Residence, experts-by-experience, disability and arts organisations and clinicians will work in collaboration to curate and co-produce new understandings of the experiences of ventilated people, across a host of identity positions, to interrogate the new cultural politics of respiration and ventilation in a continuing global pandemic, and as we imagine post-pandemic futures.