Pathfinders are invested in creating an inclusive research environment for young adults with neuromuscular conditions. To do this, Pathfinders strongly advocates and practices co-produced research which is conducted and managed by those with lived experiences.

Pathfinders Research

In 2021, Pathfinders established a group of researchers committed to researching issues that affect people with muscle weakening conditions. The team is led by Dr Suzanne Glover, who has Spinal Muscular Atrophy (Type II). Our diverse team of researchers includes university academics, students, and individuals both with and without a lived experience of disability who have an interest in muscle weakening conditions.

You can see images of our current researchers below:

How we work

Pathfinders is committed to making sure that our research is carried out in an inclusive and innovative way, working as, and with, people with muscle-weakening conditions. Therefore, we demonstrate this throughout our own research, and aim to educate other organisations on why it is important for disabled people to be part of the whole research process. You can read here about a previous project supported by Pathfinders, that worked especially effectively in partnership with disabled young people as researchers and research leaders.

What we do

Our research aims to improve choice, control and the quality-of-life for adults living with neuromuscular conditions in the UK and beyond. We continue to achieve this through ensuring that disabled people’s lived experience is placed at the heart of all research we engage with. From social research concerning issues such as identity, to clinical understanding of conditions, treatment and interventions across both health and social care, we believe in co-production. You can read more about co-production here.

I would encourage others to take part in research as a participant, but to also actively shape the way in which research is conducted through involvement in peer-led work

Dr Suzanne Glover, Research Officer, Pathfinders Neuromuscular Alliance

Research projects

Pathfinders has recently fronted an innovative research study examining the transition to adulthood for those with Duchenne Muscular Dystrophy (DMD), funded by PTC Therapeutics and NIHR School for Social Care Research. In November 2023, Pathfinders proudly launched their findings of this research in the ‘Entering Adulthood with Duchenne Muscular Dystrophy’ report. You can read the report here, or by clicking the button below.

Further active research projects include:

• Empowering Transition: A Co-Production Transition Resource Development Project – Funded by PTC and led by Dr Suzanne Glover
• “More Than Muscle and Movement”, developing and using co-produced research outputs focusing on transition to adulthood for young people with Duchenne Muscular Dystrophy – Funded by NIHR School for Social Care Research led by Dr Suzanne Glover.
• Cripping Breath: Towards a new cultural politics of respiration – Funded by a Wellcome Trust Discovery Award led by Dr Kirsty Liddiard, University of Sheffield
• Scoping social care and support priorities for young adults with neuromuscular conditions – Funded by NIHR School for Social Care Research led by Dr George Peat, Northumbria University
• More projects will be announced soon!

Past projects we have supported

Chief Investigator	Institution	Project Area
Laura McLarty	University of Leeds	Pressure Ulcer Prevention At Home (find out more)
Dr Megan McNiff	Duchenne UK and the DMD Hub, RTI International and Parent Project MD	Clinician, patient, and caregiver attitudes regarding new treatments for DMD
Dr Claire Wood	University of Newcastle	Sexual Functioning and Fertility in DMD
Prof Bryony Anne Beresford	University of York	Chaplaincy services and spiritual care and support needs of children and young people, and their parents, facing end of life

Project Summaries

• Sex and Fertility (Original Paper by Dr Janet Hoskin from the University of East London, and Dr Claire Wood from Newcastle University)