John Walton Muscular Dystrophy Research Centre

24/09/2025

📢 We are looking for a Project Assistant!

Join an exciting international project led by Professor Volker Straub that harnesses AI & MRI technology that aims to help improve diagnosis and monitoring of neuromuscular diseases.

Based at Newcastle University’s JWMDRC, you will play a key role supporting global collaborations and advancing clinical care and research.

To find out more & apply: http://bit.ly/4pEYNOz

18/09/2025

🍂 Autumn Offer Alert! 🍂

Join us at the 8th International TREAT-NMD® Conference in Lisbon, and save 20% on your ticket if you book by 30 September 2025!

📅 10–12 February 2026
📍 Altis Grand Hotel, Lisbon, Portugal
🎟️ Use code AUTUMN20 at checkout

This global event brings together leaders in neuromuscular healthcare to explore the theme:
“Addressing Challenges in a Changing World.”
Expect sessions on:
• Patient involvement in clinical trials
• Global standards of care
• Gene therapy
• Regulatory complexity
• Market access & reimbursement
… and more!
🔗 Learn more & book now: https://www.treat-nmd.org/conference/

Help us spread the word — we’d love to see you in Lisbon!
hashtag hashtag hashtag hashtag hashtag hashtag hashtag

15/09/2025

Today we're supporting international myotonic dystrophy awareness day!

Myotonic Dystrophy (DM) is an inherited multisystem condition that mainly causes progressive muscle loss, weakness and myotonia.

Join us in raising awareness and supporting research: http://bit.ly/41Wng82


Myotonic Dystrophy Foundation

12/09/2025

📣 We’re pleased to share an invitation from our partners at Duchenne UK and the DMD Care UK Nutrition Working Group for two upcoming online sessions designed for families affected by Duchenne muscular dystrophy.

These pilot sessions mark the beginning of sharing key recommendations from the forthcoming DMD Care UK guidance on childhood nutrition. They also offer a space for peer learning, facilitated by members of the Nutrition Working Group.

🕒 Each session will run for 45–60 minutes and include:

10 minutes of practical guidance and top tips on managing nutrition

35–50 minutes of open discussion, with opportunities to ask questions and hear from other families

🔍 Themed sessions:

Nutrition in the early days / when starting steroids 📅 Thursday, 25 September at 6pm 🔗 Register here: http://bit.ly/4nmwbYw

Nutrition when approaching loss of ambulation 📅 Tuesday, 30 September at 6pm 🔗 Register here: https://bit.ly/4mgu07L

📨 To help tailor the sessions to your needs, please send suggestions or questions to Laurie Cave at laurie.cave@glasgow.ac.uk by 18 September.

We encourage families to take part and help shape future sessions. Everyone is welcome.

08/09/2025

⭐£22 million NIHR investment to strengthen UK health and life sciences innovation⭐

We are delighted to announce that NIHR Innovation Observatory at Newcastle University has been awarded £22M by the National Institute for Health and Care Research to continue research identifying emerging medicines, diagnostics, devices and digital technologies. This five-year funding (from April 2026) will:

👉Enhance horizon scanning methods and infrastructure
👉Support capacity building across health and care
👉Deepen collaborations with government, industry, and global partners

Director of Innovation Observatory, Professor Dawn Craig, said:

“This award will further enhance our ability to turn data into rapid, actionable insights – driving smarter decisions, faster innovation adoption, and deeper collaboration with partners.”

Read full announcement here 👉 https://ow.ly/ooyc50WPtFj

07/09/2025

📢 Ahead of World Duchenne Awareness Day, announced its first curated guideline—reviewing DMD Care UK’s cardiac care guidance for children & carriers. A vital step toward consistent, high-quality care across the UK.

Duchenne UK World Duchenne Organization
🔗

HomeNewsNews articlesFirst NICE-curated guideline announced ahead of World Duchenne Awareness DayIn the lead-up to World Duchenne Awareness Day on Sunday 7 September, we’re pleased to announce the completion of our first assessment of an externally developed clinical guideline. News4 September 202...

07/09/2025

🎈Today, on World Duchenne Awareness Day, we stand with the global Duchenne and Becker muscular dystrophy community.

At JWMDRC, our work is driven by the belief that research, care, and collaboration must go hand-in-hand to improve lives. This year’s theme reminds us: “Duchenne is not just a diagnosis—it’s a lifelong journey.”

We remain committed to advancing diagnostics, care pathways, and translational research that support individuals and families throughout that journey.


World Duchenne Organization Duchenne UK Action Duchenne
🔗 worldduchenneday.org

29/08/2025

📅 25 September 2025 – Newcastle
The FSHD Annual Engagement Day is back!

Here’s what people said about last year’s event:
💬 “High-quality presentations.”
💬 “Very informative on a wide range of topics.”
💬 “Loved the interactive sessions.”

This year we’re building on that success with:
🔬 Expert research updates
🩺 Clinical advice on pain, sleep & exercise
👩‍⚕️ Optional 1:1 consultations

It’s free – but spaces are limited.

Book now: https://rb.gy/gabmw7

14/08/2025

Congratulations to our director, Volker Straub, for receiving the LGMD Innovator award from Kelly Brazzo from Curelgmd2i Foundation at the International LGMD Conference in Orlando on 19th July 👏

Kat Bryant Knudson, founder of The Speak Foundation, commented: "This award reflects your dedication, passion, and meaningful work that continues to inspire others and advance our shared mission. We are truly honored to celebrate your achievements at this year’s conference."

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


Muscular Dystrophy UK

21/07/2025

is a rare neuromuscular disorder. No approved treatment is currently available. Slow and variable disease progression complicate trial design and significantly impair treatment development. The ability to identify patients at risk of rapid progression and to predict the extent of muscle degeneration in a specific individual are critical unmet needs. While muscle imaging from well-characterised patients and transcriptomic technologies provide rich data, these remain under-utilised for predictive modelling. Using machine learning, this project aims to generate integrated disease progression models, enabling the identification of patients likely to deteriorate more rapidly. Results will also enhance our understanding of disease mechanisms and suggest hypotheses for therapeutic targeting.

This PhD studentship is part of the LifeArc ARDT, a UK-wide £12m partnership between Newcastle, Birmingham, and Belfast to accelerate rare disease trials. Students will receive training, engage in translational research, and collaborate across institutions. More info: https://rarediseasetrials.org.uk/.

To find out more & apply: https://bit.ly/4eVKUqe

11/07/2025

Register now for the BMS Annual Meeting 2025 in Oxford!

Follow the link for an early-bird discount:
https://ucl.ac.uk/centre-for-neuromuscular-diseases/partners-and-networks/british-myology-society