John Walton Muscular Dystrophy Research Centre @ Newcastle University

DMD Care UK - a collaborative project between the JWMDRC and Duchenne UK - visited Jacksplace Hospice near Winchester this week to learn how University Hospital Southampton NHS FT provides coordinated, multi-disciplinary clinical care to adult patients living with #Duchenne muscular dystrophy outside of the hospital setting. Cathy Turner, Project Manager from the JWMDRC, was joined by Dr Zoya Alhaswani, Consultant Paediatrician from Birmingham Heartlands Hospital (member of our Education, Palliative Care and Spinal working groups) and Lisa Cutsey, Transition Nurse Specialist from Leeds Hospital (Transition working group lead). We were inspired by the whole-team approach to care delivery and the patients' views on how well the model worked for them - lots for DMD Care UK to think about. Thank you to the wonderful MDT who hosted us and allowed us to shadow them and, of course the patients who agreed to us being there: • Dr Amanda Brain, Associate Palliative Care Specialist • Suni Narayan, Neuromuscular Co-ordinator and Specialist Physiotherapist • Dr Georgina Burke, Consultant Neurologist • Harriet Smith, Clinical Nurse Specialist • Kathryn Docherty, Care Co-ordinator and Occupational Therapist • Dr Paul Haydock, Consultant Cardiologist • Nicola Currie and Alexander McLaughlin, Cardiac Technicians Cardiac Care Guideline published in BMJ Open Heart: https://lnkd.in/eQimnF5b Respiratory Care Guidelines published in BMJ Thorax: https://lnkd.in/eQX6mH_c

We have an exciting opportunity to join our project team as a Registry Project Manager & Curator! To find out more and apply: https://lnkd.in/e8-DsCv2

Join us for a day dedicated to the FSHD community! Connect and learn about the latest clinical and research initiatives from JWMDRC. Arrival 9:30 AM, program at 10 AM. #FSHD #MuscularDystrophy Eventbrite tickets available here: https://lnkd.in/ehiMASdF

We have an exciting opportunity to join our project team as a Technical Project Manager. You will join a dynamic, international, multidisciplinary team working in the area of translational research for neuromuscular diseases and other rare disorders within the John Walton Muscular Dystrophy Centre at the Institute of Genetic Medicine. To find out more and apply: https://lnkd.in/eus4QW5k

🎉 Exciting news! The Myo-Guide web platform has hit 100 users since our launch in March 2023! 🙌 The project display at the World Muscle Society Congress has pushed the number of users to over a hundred, reaching an important milestone for the project. Thank you to all the members of the team who worked hard in bringing the project to its current state and everyone supporting us at the John Walton Muscular Dystrophy Research Centre @ Newcastle University Myo-Guide is available at www.myoguide.org

Muscular Dystrophy UK are hosting a 2024 virtual information seminar on Becker Muscular Dystrophy on Friday 18th October 2024 10am-12pm.    The BMD Hub will be represented by Abby Scott (BMD Hub Project Manager) and Prof. Michela Guglieri (Study Principal Investigator/Clinical Strand Lead). The session will explore the latest research on #BMD, along with information and guidance on living well with the condition.    For more information and to register: https://lnkd.in/ec9yfjmF

📣 We're over 1 year into the Rare Disease Research UK (RDR UK) platform! It's a real pleasure to be part of the leadership team for the coordination Hub of Rare Disease Research UK - this Hub function is delivered by Newcastle University Genetic Alliance UK and The Newcastle Upon Tyne Hospitals NHS Foundation Trust ❓ How much do you know about the RDR UK research platform? Look out for our videos this autumn, and make sure to check out our website https://lnkd.in/efzi2zu7 where you can read about who we are, what our 11 research nodes are up to, what events are coming up, and more. ✔ You can also sign-up for our platform newsletter through the website, to make sure you don't miss anything! Besides supporting our 11 nodes, our RDR UK Hub is tasked with positioning this platform within the wider UK and international rare disease arenas, sharing and embedding good practices and building collaborations to address unmet need in rare disease 🌏 #RDRUK #RareDisease #Innovation #MRC #NIHR

Dr Meredith James was one of 8 successful candidates to be awarded a new Senior Clinical and Practitioner Research Award (SCPRA) from the National Institute for Health and Care Research (NIHR) which will provide two years of funding to engage in research activities to develop her research career 🙌 https://lnkd.in/ewp_cMEi

Clinical education is critical to help doctors recognize #myotonicDystrophy. Early diagnosis and care can save lives! Improve DM medical education by supporting #myotonicDystrophy Awareness on Sept 15th! Learn more at: https://lnkd.in/gS2iCTB

🌍 60+ Global Alliance Organisations Unite to Raise Awareness on the 4th annual International #MyotonicDystrophy Awareness Day! 💚 We proudly celebrate the remarkable strength & resilience of the DM community worldwide. 🌟 Read the full press release at: https://lnkd.in/eX8V7CmQ