Dr James Lilleker (Consultant Neurologist) pictured above and Vanessa Christie-Brown (Project Manager) attended the Association of British Neurologists (ABN) Annual Conference in Liverpool from 7–9 May 2025 to present the work of SMA Care UK.

The ABN Conference is one of the most important events in the UK for professionals working in neurology. It brings together clinicians, researchers and healthcare teams to share ideas, their research and new ways of improving care for people with neurological conditions. This year’s conference focused on advancing neurological care through collaboration, innovation and knowledge sharing.

As part of the programme, James and Vanessa presented a poster about the SMA Care UK project, a national effort to make care for people with SMA more joined-up, consistent and tailored to real needs. They explained how the project is bringing healthcare professionals together to update clinical guidance. It also ensures that the voices of people living with SMA are central to how services are designed and delivered.

Presenting at the ABN was a key opportunity to put SMA care on the radar of top neurologists and clinical leaders, helping to ensure that the condition is seen as a priority within the wider world of neurology.

At its heart, SMA Care UK is about working collaboratively to reduce differences in care across the UK and ensure that everyone with SMA, regardless of where they live, has access to high-quality, person-centred support. We want to make sure that care is based not only on the latest evidence but also on what matters most to individuals and families.

Spotlight on SMA Research

We were also encouraged to see other important SMA research featured at the conference. This reflects the interest in understanding and supporting people with SMA, particularly adults, as treatment options evolve and long-term care becomes even more important. We look forward to reporting more on this research in due course.

Highlights included:

• “100 adults with SMA at the dawn of treatment: a bone health focus” – Rebecca Johnson et al., National Hospital for Neurology and Neurosurgery and University College London Hospitals NHS Foundation
• “100 adults with SMA at the dawn of treatment: demographics and treatment use” – Apoorva Kumar et al., National Hospital for Neurology and Neurosurgery.
• “Cardiac involvement in adults with SMA: a multi-centre audit of cardiac monitoring” – Colum Byrne et al., St George’s Hospital, Salford Royal Hospital & Sheffield Teaching Hospitals NHS Foundation Trust.
• “Quantitative neck strength assessment in 5qSMA: an overlooked predictor of functional status” – John Street et al. Sheffield Teaching Hospitals NHS Foundation Trust and SITraN, University of Sheffield.

These studies offer valuable insights that will help shape future care and guide the work of SMA Care UK. They also highlight the importance of continued research and shared learning across hospitals and services.

Looking Ahead

Events like the ABN Conference give us the chance to make sure SMA care is part of national conversations about neurological health. They also help us connect with clinicians and services across the UK who are just as passionate about improving care.

We’re grateful to the organisers for including our work and we look forward to continuing to push for better, more consistent support for people and families living with SMA.