Help and support Our conferences Dystonia Matters Live 2023 What is the programme? The full programme* will feature speakers in a mixture of talks, Q&A sessions, & interactive breakout zones on a wide range of topics including treatments, mental health wellbeing, & living well. Friday @ Dystonia Matters Live 2023 The Main Stage 100,000 voices | 11:15 - 12:15 Featuring... ~ Carol Huntley, Dystonia UK North East group coordinator ~ Ella Middleton, TikTok Superstar ~ Q Khan MBE, Dystonia UK Ambassador ~ DK, Patient speaker ~ A chance to hear awareness raising champions from across the country share the different ways they magnify the voices of the 100,000 people in the UK diagnosed with dystonia in the UK. Your Voice Heard | 12:15 - 12:30 Featuring... ~ Victoria Wareham, Dystonia UK Director of Operations & Development ~ We'll be sharing the ways in which your voice has been heard & how Dystonia UK magnifies that voice. Bitesize Research | 1:30 - 1:50 Featuring... ~ Dr Anna Sadnicka, Consultant Neurologist & Clinical Lecturer ~ A snapshot of the latest research looking at the role of the cerebellum in dystonia. The NHS & Neurology | 1:50 - 2:50 Featuring... ~ Georgina Carr, The Neurological Alliance ~ Dr Amit Batla, Consultant Neurologist & Clinical Associate Professor ~ Joe, Patient speaker ~ Dr Niranjanan Nirmalananthan, National Clinical Director (NCD) for Neurology & Consultant Neurologist ~ We'll be taking a look at recent changes in the NHS & the important policy issues that need tackling now to improve neurology services in the future. Exercise & Endorphins | 3:15 - 4:15 Featuring... ~ Gemma Stevenson, Dystonia UK Ambassador ~ Tully Kearney MBE, GB Paralympic Gold & 7x World Swimming champion & Dystonia UK Patron ~ Kyrby Brown, Managing Director, Momentum Mobility & Rehab Ltd ~ Here you'll have the chance to find our more about the physical & mental benefits of exercise & how to adapt movements to suit your dystonia. The Downlow on DBS | 4:15 - 5:25 Featuring... ~ Dr Antonella Macerollo, Consultant Neurologist & Honorary Clinical Senior Lecturer ~ Jan, Patient speaker ~ Mr Jonathan Ellenbogen, Consultant Neurosurgeon ~ Luca, Patient speaker ~ Russell Mills, DBS Nurse specialist ~Discussing all things deep brain stimulation surgery; from the operation to the aftercare for kids & adults. The Acoustic Stage TikTok Taster | 1.50 Featuring... ~ Ella Middleton, TikTok Superstar ~ Deep dive - Google Research Projects| 4.15 - 5.15 Featuring... ~ Richard Cave, Speech & Language therapist ~ Saturday @ Dystonia Matters Live 2023 The Main Stage The NHS & You - From Kids to Adults | 10 - 11:30 Featuring... ~ Jayne Hidderley, Chair Lay advisory group & Trustee Royal College of Emergency Medicine ~ James Wishart, Dystonia UK Trustee ~ Sharon, Patient speaker ~ Dr Jean-Pierre Lin, Consultant Paediatric Neurologist ~ Dr Amit Batla, Consultant Neurologist & Clinical Associate Professor ~ Dr Niranjanan Nirmalanathan, National Clinical Director (NCD) for Neurology & Consultant Neurologist ~Looking at all aspects of interacting with the NHS & how to get the best out of it. Tips & advice on how to approach appointments, advocating for yourself during hospital stays & interacting with health care practitioners who haven't heard of dystonia. As well as exploring potential challenges & ways to ease transitioning from paediatric to adult services. Botulinum Toxin Today | 11:30 - 12:30 Featuring... ~ Dr Peter Moore, Consultant Neurologist ~ Dr Richard Ellis, Consultant Neurologist ~ Dr Tim Harrower, Consultant Neurologist & British Neurotoxin Network Board director ~Botulinum toxin injections are one of the leading treatment options for managing dystonia; join our panel of clinicians & researchers to hear the latest botulinum toxin news. Dystonia UK | 1:30 - 1:50 Featuring... ~ Dayna Ferdinandi, Director of Fundraising & Communications ~ Victoria Wareham, Dystonia UK Director of Operations & Development ~ Find our more about the work of the only national charity for people living with dystonia in the UK. The MDT Approach | 1:50 - 2:40 Featuring... ~ Emma Milani, Psychotherapeutic Counsellor ~ Dr Jennifer Foley, Senior Clinical Neuropsychologist & Honorary Lecturer ~ Dr Kathryn Peall, MRC Clinician-Scientist Fellow & Honorary Consultant Neurologist ~ Dr Vijay Palanviel, Medical Director & Senior Consultant in Paediatric Neurodisability at The Children's Trust ~Join us as we explore the benefits of a multi-disciplinary team approach. Talking to the experts that make up these teams & understanding how they work together to help you manage your dystonia most effectively. Bitesize Research | 3 - 3:20 Featuring... ~ Professor Ian Loram, Professor in Neuromuscular Control of Human Movement ~ "A clinical tool for real-time analysis and visualisation of cervical muscles for cervical dystonia" - what next? Mental Health Masterclass | 3:20 - 3:55 Featuring... ~ Emma Milani, Psychotherapeutic Counsellor ~ Dr Jennifer Foley, Senior Clinical Neuropsychologist & Honorary Lecturer ~Just like looking after our physical health there are plenty of things we can be doing to help our mental health. Find out more in this masterclass! Behind the Brain | 4:15 - 5 Featuring... ~ Professor Tom Warner, Professor of Clinical Neurology & Director of Reta Lila Weston Institute for Neurological Studies ~ Dr Nuria Seto-Salvia, Post doctoral researcher ~ Dr Sarah Wrigley, Clinical Research Training Fellow ~We'll be discovering how the latest technology is being used to learn more about the brain & the causes of dystonia. The Dystonic Musician | 5 - 5:15 Featuring... ~ Sarah Fisher, The Dystonic Musician ~ The Acoustic Stage Deep dive - 'Livechart' use in clinics | 1.50 - 2.30 Featuring... ~ Dr Peter Moore, Consultant Neurologist ~ Dr Richard Ellis, Consultant Neurologist ~ Deep dive - Paediatrics | 3 - 3.55 Featuring... ~ Dr Jean-Pierre Lin, Consultant Paediatric Neurologist ~ Dr Vijay Palanviel, Medical Director & Senior Consultant in Paediatric Neurodisability at The Children's Trust ~ *Programme may be subject to change.