📢New projects feature in the #LGMD News Autumn edition. Produced for the community by The Speak Foundation, this is a great resource for members of the LGMD community🙌 See page 14 for an article about new projects at our centre! 📰Sign up here: bit.ly/4pWGsNl

Today at the FSHD Annual Engagement Day experts from NuTH are giving useful talks on pain management, sleep issues and exercise prescription👩‍⚕️ We're also getting research updates from the lab team on FSHD mechanisms, lab studies and imaging projects👨‍🔬 #FSHD

🔬This Spinal Muscular Atrophy Awareness Month, from SMA Europe, we are Connecting the Dots! Research in SMA is vital. Did you ever wonder how research can have a real impact on the lives of people who live with SMA? Only together, WeAreOne #SMAAwareness #ConnectingTheDots #SpinalMuscularAtrophy

Disabled people want to live a full life. Instead, we’re forced to scrap over our right to food and a wash | Frances Ryan

Check out our latest publication @jwmdrc.bsky.social pubmed.ncbi.nlm.nih.gov/40582339/ Very proud of the work done by the team to improve the understanding of the care needs of our patients. Next steps … how do we get our patients to be more active?

🍊 Today is World FSHD Day! 📅 Held on June 20th to raise public awareness of #FSHD 🧬 Our Patient Registry helps advance research and development of treatments, therapies, and care for all those diagnosed with FSHD in the UK. 💻 Visit our newly revamped website to learn more: fshd-registry.org.uk

Now for our big news... I'm delighted to announce that the UK FSHD Patient Registry has now 🌟 RELAUNCHED 🌟 onto our new bespoke registry platform, with improved questionnaires and features! Visit our website to learn more and sign up today! 👀 www.fshd-registry.org.uk 👀 #FSHD #WorldFSHDday

Join Oxford Paediatrics study on Nemaline Myopathy. See more about the trial at: www.musculardystrophyuk.org/research/cur...

'The NHS wouldn’t tell a surgeon to stop an operation halfway through. 'A pharmacist wouldn’t hand out 40% of a course of antibiotics. 'So why is it OK for patients to be denied a full course of rehabilitation?' @sarahazzard.bsky.social in the Guardian: www.theguardian.com/society/2025...

The Highly Specialised Service for rare neuromuscular disorders in Newcastle is organising an info day for people living with #LGMD, in person or remotely. This will be a mixture of talks from experts in research, clinical care, and interactive workshops. bit.ly/3RBg8YU

Very proud to share our last publication to help improving understanding of the assessment of disease progression in SMA @jwmdrc.bsky.social @mdukcharity.bsky.social @curesma.bsky.social www.nmd-journal.com/action/showP...

There are many things that make Newcastle great... and the Toon Army were absolutely incredible yesterday! 🖤🤍🖤🤍 Huge well done to all @newcastleunited.com - Carabao Cup Winners 2025 ⚽️🏆

Clowns

Howay the lads! ⚽ #MyNCLPics #WeAreNCL #NUFC #AngelOfTheNorth #CarabaoCup

Becca Leary, Senior Project Manager for the PaLaDIn project gives an overview for the overall objectives at the General Assembly in Rome today

The curators' meeting was also a fantastic opportunity for our newest team members, Data Coordinators Lucy and Aleks, to learn more about the network and meet the rest of the TGDOC family. They presented registry posters, made lots of valuable connections and represented our team brilliantly! 👏🧬

We have a new social media account on BlueSky alongside our previous accounts, so please follow us for updates on the translational research we do that brings diagnosis, care and therapy to people living with neuromuscular diseases! 🙌

We are celebrating a publication describing the efficacy of a new MRI sequence call sodium MRI to detect early damage in skeletal muscle of individuals after an exercise. This is a collaboration between MRI centre & JWMDRC funded by Jain Foundation through the COS study. 🙌 bit.ly/4gviylW

Children in UK suffering ‘irreversible harm’ due to physiotherapy delays - The Guardian highlights the stark reality for children and their families who are facing unacceptable long waiting lists for treatment. #RightToRehab

'Sadly, long wait lists and limited access to physiotherapy, due to staffing shortages and shortages of suitable rehab spaces are causing irreversible harm.' 94% of paediatric physiotherapists are concerned about their patients accessing the rehab treatment they need. #RightToRehab

#MuscularDystrophy #UK (@mdukcharity.bsky.social 👋) have launched a patient survey to help develop their new strategy. 🗣️ Ensure your #PatientVoice is heard! Complete the survey here before it closes on 17 Feb: loom.ly/F45mAwg 📝 #Neuromuscular #NMD #MyotonicDystrophy #DM1 #FSHD #SMA

Home to our patient registries team, and a world-leading centre of #MuscularDystrophy research, The John Walton Muscular Dystrophy Research Centre (JWMDRC) is now on Bluesky here @jwmdrc.bsky.social Please follow JWMDRC for news, events and information on #translational #neuromuscular #research

Comencem #bluesky Let’s start #bluesky