What is the programme? Expand 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.
When is it? Expand Friday 30th June & Saturday 1st July 2023. Tickets give you entry to both days but it's up to you how much you attend. Registration is open on both days, timings TBC. Doors open Friday: 10:30am BST Doors close Friday: 5:30pm BST Doors open Saturday: 9am BST Doors close Saturday: 5:30pm BST
Where is it? Expand INNSiDE Newcastle - a lifestyle hotel in the heart of Newcastle. To help you plan your visit, we've created this information sheet on travel and accommodation options.
Is the event accessible? Expand Our chosen venue is open to all with: step free access and internal lifts to all floors mobility accessible facilities and accommodation on all floors available nearby railway station with step free access and station assistance (we recommend contacting your travel provider in advance) car parking available nearby We have regularly scheduled breaks and quiet rooms available throughout so however you choose to join you can feel comfortable during the day. It’s also up to you how much you attend. We are committed to making this event as inclusive as possible. If you have any additional requirements, please get in touch and we will do our best to accommodate. Please note, we cannot offer virtual attendance on this occasion, however, we will be making key information and support available to all online after the event.
What does registration include? Expand A digital welcome pack. A printed programme. Refreshments, including lunch. Access to live events on both days. A goody bag. Networking opportunities. Access to exhibition stands. Free entertainment.
Are there any evening activities I can join? Expand Join us for pizza & a pint or a prosecco as we celebrate the 40th anniversary of Dystonia UK with our fantastic community! What: Live entertainment and celebrations! Where: 'The Main Stage - At Night' @ The INNSiDE Hotel, Newcastle. When: Friday 30th June 2023, 6:30 - 10pm. Dress: Give a nod to the 80s (Prizes awarded to those who really commit!). Tickets: £25 per person. 10% discount for Dystonia UK members. Tickets must be bought in advance!
Can I join virtually? Expand This is an in person event, however, we will be making key information and support available to all online after the event.
What can I expect? Expand Dystonia Matters Live is a 2-day event bringing our Dystonia Matters magazine to life with a mix of professional speakers, Q&A sessions, exhibition stands, entertainment, goody bags, and a chance to meet others with the condition.
Who is it for? Expand Anyone living with dystonia. Whether you have a dystonia diagnosis yourself, support someone who does or work in the field, everyone is welcome. The event is suitable for adults, kids, carers & families too. Please note there will be no carers on site so children attending must always be accompanied by an adult.
How much is it? Expand Tickets are free* but you must register in advance. *A refundable deposit of £25pp (excluding children 16 and under) is required when booking to secure your place. All deposits will be refunded to individuals within 1 month of attendance of the event. We know sometimes plans change, refundable deposits help us to accurately plan ahead confirming things like catering with our venue and ensure we have the right resources in place to help everyone who can attend have a great day!
Are tickets free? Expand We love bringing you our events for free, and wherever we can we do. This year with thanks to the generous support from the community in our #JustOnePound campaign and the ongoing commitment from our sponsors, we are really pleased to offer tickets to this event to everyone for free. This is not a profit-making event. Any money raised through donations is used for costs relating to the event.
Why do you ask for a refundable deposit? Expand We know sometimes plans change, refundable deposits help us to accurately plan ahead confirming things like catering with our venue and ensure we have the right resources in place to help everyone who can attend have a great day!
How do I register for a ticket? Expand Tickets are now sold out but you can join the waiting list to be notified if more become available.