Sign in

John Walton Muscular Dystrophy Research Centre

@jwmdrc.bsky.social
134 followers 140 following 55 posts

Performing world-class translational research to bring diagnosis, care and therapy to people with neuromuscular disease

PostsRepliesMedia
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 14/08/2026
Come and meet members of our LifeArc Acceleration of Rare Disease Trials team to talk about rare disease and research. They'll be at the Newcastle Mela on 31st August! @lifearc.bsky.social
010
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 04/08/2026
Returning for its 3rd year, BEED brings the Becker Muscular Dystrophy (#BMD) community together to learn, share & connect. Free to attend; travel support available. Designed for people with Becker MD, families and carers. Register today: bit.ly/4h7HfJg
010
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 30/07/2026
Join us on 15 August 2026 for the FSHD North East & North Cumbria Annual Engagement Day in Newcastle. Connect with the #FSHD community, hear the latest research updates, and meet researchers and healthcare professionals. Please register here: bit.ly/4w2zfx1
000
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 26/05/2026
Volker and Meredith joined the 2nd European LGMD2I/R9 conference in Denmark this weekend, meeting people with #LGMD and families from 21+ countries. Volker spoke on standards of care and Meredith on physio and rehab. Thanks to Kelly Brazzo and Cure LGMD2I for the invitation.
000
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 20/05/2026
Today we celebrate #ClinicalTrialsDay and the incredible #ClinicalResearch community whose work strengthens our ‘Clinical Care & Diagnostics’ and ‘Clinical Research’ core pillars — and makes a real difference for patients worldwide
010
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 05/05/2026
The latest copy of #LGMD News is out now and contains an article by Brad Williams from the Jain Foundation and our own Marianela Schiava on "LGMD & Medical Misinterpretation". Click here to read: bit.ly/4tTT9tP
bit.ly
The Speak Foundation
Discover the latest insights and updates on limb-girdle muscular dystrophy in the Limb-Girdle Magazine, your source for LGMD education and news.
000
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 30/04/2026
Interested in uncovering why muscles weaken and fail in rare genetic diseases—and how this knowledge could help develop future therapies? We have a great new PhD opportunity for anyone interested in muscle biology, mitochondria, & rare disease research! bit.ly/3OCUbuW
bit.ly
Mechanistic dissection of metabolic and mitochondrial stress pathways in a titin-related myopathy at Newcastle University on FindAPhD.com
PhD Project - Mechanistic dissection of metabolic and mitochondrial stress pathways in a titin-related myopathy at Newcastle University, listed on FindAPhD.com
010
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 01/04/2026
Congratulations to the team for a new paper published 👏 🧫By combining advanced co-culture systems, secretome profiling, and 3D engineered muscle models, we investigated how #Duchenne muscular dystrophy (DMD)-derived FAPs inhibit myogenesis. bit.ly/3PE1Hpv
bit.ly
Impact of C4BPA on Muscle progenitor cell differentiation: insights for Duchenne muscular dystrophy treatment - Cell Death & Disease
Cell Death & Disease - Impact of C4BPA on Muscle progenitor cell differentiation: insights for Duchenne muscular dystrophy treatment
000
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 31/03/2026
Check out the latest PaLaDIn Newsletter March 2026 to catch up on recent work on the project and developments in the Interactium platform! 👀 www.linkedin.com/pulse/paladi...
linkedin.com
PaLaDIn Newsletter March 2026
What’s in this edition? Promptly Health and PaLaDIn collaborate to build the Interactium® PaLaDIn at TREAT-NMD’s 8th International Conference in Lisbon PaLaDIn and Rare Disease Day 2026 PaLaDIn at Par...
000
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 25/03/2026
One of our Strand Leads, Prof Michela Guglieri, presenting "gene therapy in muscle diseases" as part of a series of seminars in Padova on neurology topics; “martedì della clinica neurologica” meaning "Tuesdays of the neurology clinic" 😀
000
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 20/03/2026
📢Another paper to celebrate! This one, authored entirely by members of the JWMDRC, aims to provide insight into how mobility, age, and diagnosis may affect health-related quality of life in adults with neuromuscular disease👏 www.neurology.org/doi/pdf/10.1...
neurology.org
Assessing the Relationship of Quality of Life With Functional Status in a Large Cohort of Adult Patients With Neuromuscular Disorders | Neurology Clinical Practice
Background and ObjectivesHealth-related quality of life (HR-QoL) is compromised in patients with neuromuscular disorders (NMDs). Disease severity alone does not predict HR-QoL; there are other known p...
011
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 20/03/2026
We are pleased to announce a new publication "Cracking the Code: Genotype–Phenotype Correlation Models in Sarcoglycanopathies" which aimed to establish accurate genotype–phenotype correlations for LGMDR3, LGMDR4, and LGMDR5 👏 bit.ly/4lGc1sL #LGMD
bit.ly
Cracking the Code: Genotype–Phenotype Correlation Models in Sarcoglycanopathies
Objective Sarcoglycanopathies are among the most severe limb-girdle muscular dystrophies (LGMD), though milder presentations have been described. These diseases are primarily caused by missense vari...
010
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 09/03/2026
We’re delighted to be at Muscular Dystrophy UK’s Birmingham Information Day on Sat 14 March — a free event for adults and parents of children with muscle‑wasting conditions. We’ll be representing JWMDRC and sharing the work of our Registries Team. Sign up here: bit.ly/4rj0CQM
020
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 04/03/2026
Thrilled to announce our paper has been accepted in the Journal of Neuromuscular Disorders. This was a fantastic effort bringing the efforts of patient community, registry and researchers together to learn more about liver health in MTM-CNM patients bit.ly/4rKvfQd
030
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 02/03/2026
📢 New paper published, "Respiratory function in Becker muscular dystrophy: a comprehensive longitudinal study" which informs clinical surveillance strategies & care recommendations, and supports the design & interpretation of clinical trials in #BMD 🙌 bit.ly/4chzdLr
011
Reposted by John Walton Muscular Dystrophy Research Centre
JWMDRC Patient Registries @jwmdrc-registries.bsky.social · 28/02/2026
Our national and international #neuromuscular patient registries are proud to support #RareDiseaseDay! Learn more about our work at jwmdrc.org/networking/registries #LightUpForRare #ShareYourColours
043
Reposted by John Walton Muscular Dystrophy Research Centre
@Newcastlepsrc @newcastlepsrc.bsky.social · 03/02/2026
📢NOW OPEN! The NIHR Newcastle PSRC Pre-Application Support Fund is now live. Attend info webinar - 12th February 13:00 - 14:00. psrc-ncl.nihr.ac.uk/academic-car... Deadline: 13th March. @newcastleuni.bsky.social @nclpharmacy.bsky.social @medicalsciencesncl.bsky.social @nihrpsrcs.bsky.social
lnkd.in
LinkedIn
This link will take you to a page that’s not on LinkedIn
044
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 13/01/2026
📢 New academic initiative aimed at characterizing multisystem proteinopathies We invite colleagues worldwide who have diagnosed patients with genetic variants in MSP-associated genes to participate in this international collaboration Find out more: bit.ly/4qjIRkH
001
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 13/01/2026
A new year, a new paper! Congratulations to the Basic Research team for this paper on unknown molecular interactions of EGFR that drive muscle degeneration in #DMD These insights open the door to targeted therapies that could help slow muscle degeneration in muscle dystrophies bit.ly/4sINHKe
bit.ly
Client Challenge
001
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 21/11/2025
Proud to partner with @eurordis for #ECRD2026, Europe’s largest patient-led rare disease event. Join us in Prague & online, 3–4 June 2026. Poster abstracts now open! 👉 www.rare-diseases.eu/posters
011
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 11/11/2025
Applications are open to join the PaLaDIn Patient and Caregiver User Group (PCUG). We're looking for #patients and #caregivers with experience of a #neuromuscular disease to join and contribute. Further information is available here: bit.ly/47V9DrS
000
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 08/10/2025
We have a strong attendance at #WMS2025 on its 30th birthday, and this is the last year for our Centre Director, Prof. Volker Straub, as President. Volker gave the Congress Welcome this morning, inviting everyone to have an enjoyable and productive few days here in Vienna
040
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 01/10/2025
📢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
031
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 30/09/2025
Today we're supporting #LGMD Awareness Day! 🙌 While we can't reverse LGMD yet, proper care, support, and therapies can make a world of difference. Let's advocate for accessible care for all living with LGMD. #LGMDday2025 #lgmdawarenessday
010
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 25/09/2025
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
011
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 15/09/2025
Today we're supporting international myotonic dystrophy awareness day! #MyotonicDystrophy (DM) is an inherited multisystem condition that mainly causes progressive muscle loss, weakness and myotonia. Join us in raising awareness and supporting research: bit.ly/41Wng82
001
Reposted by John Walton Muscular Dystrophy Research Centre
NIHR Innovation Observatory @nihr-io.bsky.social · 02/09/2025
⭐£22M NIHR investment to strengthen UK health & life sciences innovation We are delighted that @nihr-io.bsky.social at @newcastleuni.bsky.social has been awarded £22M by @nihr.bsky.social to continue research identifying emerging medicines, diagnostics, devices & digital tech 👉 ow.ly/ooyc50WPtFj
073
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 07/09/2025
🎈 On World Duchenne Awareness Day, we stand with the #Duchenne & #Becker Muscular Dystrophy community. At JWMDRC, we’re committed to advancing care, research & inclusion—because Duchenne is a lifelong journey. #WDAD2025
000
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 29/08/2025
FSHD Annual Engagement Day – 25 Sept, Newcastle 🔬 Research updates 🩺 Clinical sessions 👩‍⚕️ 1:1 consultations 💬 Last year: “high quality, interactive & informative” Book now: rb.gy/gabmw7 #FSHD
010
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 14/08/2025
Our director Volker Straub receiving the LGMD Innovator award from Kelly Brazzo from CureLGMD2i at the International LGMD Conference in Orlando on 19th July 👏🥳 #LGMD
000
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 01/08/2025
We're looking for children & adults with Nemaline Myopathy to join a study to collect data on the natural progression of the condition. Help us understand Nemaline Myopathy to be ready for therapeutic developments See more at bit.ly/3HeoRPc #NemalineMyopathy #RareDisease
000
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 21/07/2025
🔍 Want to model rare disease progression using #ArtificialIntelligence & #ML? Join a PhD at Newcastle Uni tackling FSHD with #bioinformatics + #MachineLearning. Part of LifeArc ARDT’s £12m UK-wide initiative. To apply: bit.ly/4eVKUqe
bit.ly
Search for Postgraduate Scholarships and Other Funding
Search scholarships and funding for postgraduate study at Newcastle University. Find financial support tailored to your course and eligibility.
021
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 20/06/2025
Join us for the FSHD Engagement Day in Newcastle on 25 Sept 2025! Connect with others, hear from experts & explore key aspects of life with FSHD. Book your place: rb.gy/gabmw7 #FSHD #FSHDUK #FSHDEurope #WorldFSHDDay
120
Reposted by John Walton Muscular Dystrophy Research Centre
JWMDRC Patient Registries @jwmdrc-registries.bsky.social · 20/06/2025
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
043
Reposted by John Walton Muscular Dystrophy Research Centre
JWMDRC Patient Registries @jwmdrc-registries.bsky.social · 20/06/2025
We were fortunate to attend the @fshdsociety.bsky.social International Research Congress and FSHD Europe Patient Connect meetings last week. These fantastic events brought together the FSHD community across Europe to make new connections and share research advancements #WorldFSHDday
042
Reposted by John Walton Muscular Dystrophy Research Centre
JWMDRC Patient Registries @jwmdrc-registries.bsky.social · 20/06/2025
🍊 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
023
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 20/06/2025
The JWMDRC is proud to support the launch of the PaLaDIn Interactium data platform tender! Bids are open till 17 July—help us shape the future of rare disease data infrastructure. More info 👉 project-paladin.eu/paladin-inte...
project-paladin.eu
PaLaDIn Interactium® Data Platform: Invitation to Tender - Project PaLaDIn
We are now pleased to announce the opening of the Invitation to Tender stage for the development of the Interactium®.
010
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 12/06/2025
Chris Higgins, CEO of Rare Disorders New Zealand, visited us to explore advances in rare disease care & research. We discussed #neuromuscular projects like Care-DMD, PaLaDIn & MYO-Seq. His visit sparked ideas for strategic collaboration across regions. 🇳🇿🇬🇧 #RareDisease #DMD #MYO
010
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 09/06/2025
We are pleased to announce a new paper published on a study aimed to characterise a large cohort of paediatric and adult patients with Becker muscular dystrophy (#BMD) to inform clinical care and the development of standards of care guidelines 👏 link.springer.com/content/pdf/...
link.springer.com
020
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 05/06/2025
We attended the MDUK Patient Day in Northern Ireland to talk about our vital work in neuromuscular diseases. Helen Walker gave a talk on the importance of patient registries, and Abby Scott and Adam Kerr spoke to delegates about the #BMD Hub and #DMD Care UK.
020
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 03/06/2025
Dr Adam McDiarmid, Consultant Cardiac Transplant Physician & Chair of DMD Care UK's cardiac MRI task force, speaks today at #BCS2025 on cardiac imaging in Duchenne. Great to see this vital topic highlighted at such a high-profile event! 👏 #DMD #CardiacCare
010
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 02/06/2025
Congratulations to conect4children who have just had a paper published in the Journal of Medical Internet Research 'The potential to leverage real-world data for paediatric clinical trials: A proof of concept study' 👏 www.jmir.org/2025/1/e72573
jmir.org
The Potential to Leverage Real-World Data for Pediatric Clinical Trials: A Proof-of-Concept Study
Background: Pediatric clinical research, especially in rare diseases, faces persistent challenges including the identification and recruitment of eligible patients, assessing protocol feasibility, and...
000
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 27/05/2025
As part of the celebrations to mark 25 years of the Centre for Life our Centre Director, Professor Volker Straub, gave a lecture focusing on recent successes and developments in the #neuromuscular field at the ‪JWMDRC: youtube.com/post/UgkxdcG...
youtube.com
Post from John Walton Muscular Dystrophy Research Centre - YouTube
As part of the celebrations to mark 25 years of the Centre for Life (@scienceatlife) our Centre Director, Professor Volker Straub, gave a lecture focusing on...
000
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 21/05/2025
📢 Join us this September in Newcastle for a free #BMD Patient Day! Organized by BMD Hub & TREAT_NMD, the event includes expert talks, workshops & support. Connect with others who understand your journey. Register now 👉 wkf.ms/4jvcKLL
001
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 20/05/2025
Happy #ClinicalTrialsDay from JWMDRC! 🎉 Today, we celebrate the researchers, healthcare professionals, and amazing volunteers who drive medical progress. Your dedication is shaping the future of treatment and care. Thank you for making a difference! 💙 #ICTD2025
000
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 14/05/2025
INSIGHTS Public Lecture: The Newcastle way: Leading advancements in #neuromuscular research By Professor Volker Straub. Date: 15 May Time: 17:30 - 18:30 Location: Curtis Auditorium, Herschel Building, Newcastle University @newcastleuni.bsky.social www.ncl.ac.uk/university-e...
ncl.ac.uk
INSIGHTS Public Lecture: The Newcastle way | University Events | Newcastle University
000
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 17/04/2025
Congratulations to Rasya Gokul Nath for winning one of the three poster prizes at the UK Neuromuscular Translational Research Conference for her excellent work on "A spatial transcriptomic approach to understanding Duchenne muscular dystrophy" 🙌🫡
020
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 17/04/2025
The JWMDRC enjoyed the recent UK Neuromuscular Translational Research Conference at Newcastle University, and had a strong presence to present and discuss our work
010
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 17/04/2025
We are proud to announce that Physiotherapy & occupational therapy clinical guidelines have been published in the European Journal of Paediatric Neurology 🙌 developed by Anna Mayhew from the JWMDRC and DMD Care UK's physiotherapy and occupational therapy working group. bit.ly/4jkkEaK
bit.ly
Delivery of physiotherapy and occupational therapy standards of care for Duchenne muscular dystrophy: Key recommendations based on UK web-based survey
Duchenne muscular dystrophy is a neuromuscular disorder which has benefited from the implementation of key management strategies embedded in International Standards of Care. This study was prompted by...
021
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 15/04/2025
The BMD Hub has launched a UK focused survey for those living with Becker Muscular dystrophy to help us understand current care practices and identify gaps and areas for improvement. Learn more and take part in the survey here: tinyurl.com/ywbdtd6j #BMD
021