We are delighted to share that Great Ormond Street Hospital Trust has agreed to make permanent a physiotherapist role that the Duchenne Research Fund has funded for the past few years.

Senior physiotherapist Nicola Burnett (pictured) has been working with young people with Duchenne at Great Ormond Street, thanks to a grant we awarded in 2019 to create a dedicated non-ambulant clinic, ensuring that patients who are no longer able to walk can still receive vital upper-body physio to help maintain quality of life.

Consultant in neuromuscular diseases Dr Anna Sarkozy explains: “Thanks to the funds provided by the DRF, we at the Dubowitz Neuromuscular Centre have been able to establish a new joint multi-disciplinary clinic. This clinic includes physiotherapy assessment and advice alongside the doctors’ clinical review, and it is dedicated to young people with Duchenne muscular dystrophy who are non-ambulant. In particular, with this help we are now able to provide a more complete and regular clinical service to families and patients, and continue with six-monthly physiotherapy assessment for all boys with Duchenne around and after loss of ambulation, up until transition to adulthood.”

Nicola has seen more than 130 patients across 500 appointments, adapting and continuing her work through the pandemic.

We have often funded projects that might not receive funding without charity support, but we aim to help build a business case for projects to become sustainable without our continued funding in the longer term. It is fantastic news for the Duchenne community served by GOSH that this clinic will continue to thrive.

Click here to read more about Nicola’s work and the non-ambulant clinic.