John Walton Muscular Dystrophy Research Centre

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!

04/08/2026

treatReturning for its third year, the Becker Education and Engagement Days (BEED) offer a unique opportunity for the Becker muscular dystrophy community to come together to learn, share experiences and connect. We are delighted to welcome back members of our growing community, while also extending a warm welcome to those joining us for the first time.

The event is free to attend, and support with travel costs may be available where needed to help make participation as accessible as possible.

Designed for people living with Becker muscular dystrophy ( ), family members, and carers, the programme brings together education and community discussion to explore the latest knowledge, practical approaches to living well, and developments that may shape the future of Becker muscular dystrophy.

A core part of BEED is the opportunity to learn not only from the programme itself, but also from one another through conversation, shared experiences and peer support.

Applications are now open, register to attend: https://forms.monday.com/forms/6430bf85710d75b0702b5690c8d4fe84?r=use1

TREAT NMD Muscular Dystrophy UK

30/07/2026

Join us on 15 August 2026 for the FSHD North East & North Cumbria Annual Engagement Day at the International Centre for Life in Newcastle.

This free event brings together people living with , their families and carers, researchers, and healthcare professionals for a day of learning, discussion, and community. Hear the latest updates in FSHD research, ask questions, share experiences, and connect with others in a supportive environment.

Whether you're living with FSHD, caring for someone who is, or simply want to learn more, we'd love to welcome you.

Register a free place here: https://www.eventbrite.com/e/2026-fshd-north-east-cumbria-annual-engagement-day-tickets-1995070145511

25/06/2026

We are looking for a motivated and organised Clinical Trial Coordinator to join the multidisciplinary team at the John Walton Muscular Dystrophy Research Centre, supporting the delivery of innovative clinical research in neuromuscular diseases.

The role offers the chance to develop your experience in trial coordination, including exposure to advanced and gene therapy studies, within a supportive and collaborative research environment.

To find out more and apply: https://www.healthjobsuk.com/job/v8104975

20/06/2026

Today is !

We join the global community in raising awareness of Facioscapulohumeral Muscular Dystrophy (FSHD).

We remain committed to advancing research, improving care, and strengthening connections within the FSHD community.

We are also delighted to announce that our 3rd FSHD Patient Engagement Day will take place on Saturday, 15 August. Look out for more information coming soon.

26/05/2026

Volker Straub and Meredith James have participated in the 2nd European LGMD2I/R9 conference this weekend in Denmark. A fantastic patient community-led event with individuals with and their families from over 21 countries.

Volker presented on standards of care, and Meredith on Physiotherapy and rehabilitation management of LGMD.

We thank Kelly Brazzo and the Curelgmd2i Foundation for the invitation to join them on this inspiring and collaborative event!

20/05/2026

Today we celebrate and the incredible community whose work strengthens our ‘Clinical Care & Diagnostics’ and ‘Clinical Research’ core pillars — and makes a real difference for patients worldwide

ACRP - Association of Clinical Research Professionals

05/05/2026

The latest copy of News is out now and contains an article by Brad Williams from Jain Foundation Inc. and our own Marianela Schiava on "LGMD & Medical Misinterpretation".

Click here to read: https://thespeakfoundation.com/limb-girdle-magazine-1

The Speak Foundation

30/04/2026

Are you interested in uncovering why muscles weaken and fail in rare genetic diseases—and how this knowledge could help develop future therapies?

We have a new PhD project focuses on hereditary myopathy with early respiratory failure (HMERF), a rare inherited muscle disorder caused by mutations in the titin gene.

In this project, you will generate cutting‑edge human muscle cell models carrying disease‑causing titin mutations and use them to investigate how these genetic defects disrupt cellular energy production and trigger metabolic and mitochondrial stress.

Join our team and a great project for anyone interested in muscle biology, mitochondria, metabolism, and rare disease research!

Find out more: https://www.findaphd.com/phds/project/mechanistic-dissection-of-metabolic-and-mitochondrial-stress-pathways-in-a-titin-related-myopathy/?p196335

PhD Project - Mechanistic dissection of metabolic and mitochondrial stress pathways in a titin-related myopathy at Newcastle University, listed on FindAPhD.com

23/04/2026

Last month, The Duchenne Hub hosted a successful educational workshop bringing together UK healthcare professionals involved in clinical trials.

Discussions covered current and upcoming trials, gene therapies, and the transition from paediatric to adult services, alongside a ‘challenging conversations’ session led by the Communication and Leadership Academy.

Read more here:

Duchenne Hub hosts interactive educational workshop at St James’ Park Last month, the Duchenne Hub hosted a successful interactive educational workshop at St James’ Park, bringing together healthcare professionals involved in Duchenne muscular dystrophy (DMD) clinical trials from across the UK. ...