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John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 25d

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

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John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · Oct 1

📢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

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John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · Sep 30

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

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John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · Sep 25

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

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John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · Sep 15

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

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Reposted by John Walton Muscular Dystrophy Research Centre

NIHR Innovation Observatory @nihr-io.bsky.social · Sep 2

⭐£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

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John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · Sep 7

🎈 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

John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · Aug 29

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

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John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · Aug 14

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

John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · Aug 1

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

John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · Jul 21

🔍 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

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.

bit.ly

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John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · Jun 20

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

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Reposted by John Walton Muscular Dystrophy Research Centre

JWMDRC Patient Registries @jwmdrc-registries.bsky.social · Jun 20

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

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Reposted by John Walton Muscular Dystrophy Research Centre

JWMDRC Patient Registries @jwmdrc-registries.bsky.social · Jun 20

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

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Reposted by John Walton Muscular Dystrophy Research Centre

JWMDRC Patient Registries @jwmdrc-registries.bsky.social · Jun 20

🍊 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

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John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · Jun 20

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...

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®.

project-paladin.eu

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John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · Jun 12

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

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John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · Jun 9

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

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John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · Jun 5

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.

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John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · Jun 3

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

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John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · Jun 2

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

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...

www.jmir.org

John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · May 27

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...

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...

youtube.com

John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · May 21

📢 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

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John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · May 20

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

John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · May 14

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...

INSIGHTS Public Lecture: The Newcastle way | University Events | Newcastle University

www.ncl.ac.uk