A Pathfinders Report: Entering Adulthood with Duchenne Muscular Dystrophy

Suzanne Glover, Jamie Hale, Matthew Roberts, Jack Bosanquet, Ryan Dack, Janet Hoskin, George Peat, David Abbott

Research output: Book/ReportOther report

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Abstract

This report provides an accessible summary of the findings from the Entering Adulthood with Duchenne Muscular Dystrophy (DMD) project led by Pathfinders [1].

This project was led by Dr Suzanne Glover: a disabled researcher based within Pathfinders, along with a group of researchers living with DMD. Together the team designed and carried out the research which created this report. We know that this research approach brings a new and insightful perspective on the understudied area of entering adulthood. The research explores topics such as: education; confidence; change; independence, and social connection through in-depth interviews with people who have DMD.

We would like to express our gratitude to the small group of researchers (you can see more about our research team on page 08) who have worked tirelessly on this project since 2021. With heavy hearts, we remember two researchers in particular: Ryan Dack and Matt Roberts, who sadly passed away during the final stages of this report. Ryan and Matthew played a fundamental role in this project by conducting interviews, interpreting findings and developing the report. We hope that their work serves as a lasting legacy of their commitment and drive for change within the DMD community.

Whilst this report is aimed at people with DMD, it contains vital insights not just for the DMD community, but also families, teachers, health and social care professionals, and researchers. Our aim is for this work to highlight that the voices and needs of people with DMD must be at the core of their own transition to adulthood, as well as within wider policy and research development: just as they are at the core of Pathfinders’ work.
Original languageEnglish
Place of PublicationHailsham
PublisherPathfinders Neuromuscular Alliance
Number of pages32
Publication statusPublished - 6 Nov 2023
Externally publishedYes

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