Update on Treatments for Adults who have 5q SMA

Update on Treatments for Adults who have 5q SMA James Lilleker, Consultant Neurologist Robert Muni-Lofra, Consultant Neuromuscular Physiotherapist SMA UK Webinar | Published June 2026 In this webinar, SMA UK discusses the landmark decision to provide permanent NHS funding for both nusinersen and risdiplam for people living with Spinal Muscular Atrophy (SMA). This important milestone follows more than a decade of advocacy from the SMA community, clinicians, charities and patient groups. Hosted by Molly from SMA UK, the discussion features expert insights from James Lilleker and Robert Muni-Lofra, who explain: ✅ What permanent NHS funding means for adults living with 5q SMA ✅ The differences between nusinersen and risdiplam ✅ Treatment access across England, Scotland, Wales and Northern Ireland ✅ How these treatments work and who may be eligible ✅ The benefits, risks and practical considerations of each treatment option ✅ The impact treatments are having on stability, fatigue, swallowing and quality of life ✅ Future developments including high-dose nusinersen, gene therapies and emerging research ✅ Why physiotherapy, exercise, respiratory care and wider standards of care remain essential alongside drug treatments The panel also explores how attitudes towards treatment have changed over recent years and discusses the importance of continuing to monitor long-term outcomes for adults receiving disease-modifying therapies. Whether you're living with SMA, supporting someone who is, or working within the neuromuscular community, this webinar provides valuable information on the current treatment landscape and what the future may hold. For more information about SMA treatments and support services, visit SMA UK or speak with your neuromuscular team. #SMA #5qSMA #SpinalMuscularAtrophy #SMAUK #Nusinersen #Risdiplam #Neuromuscular #RareDisease #SMATreatment #NHS #DisabilityAwareness