John Walton Muscular Dystrophy Research Centre
@jwmdrc.bsky.social
Performing world-class translational research to bring diagnosis, care and therapy to people with neuromuscular disease
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
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
November 11, 2025 at 11:27 AM
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
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
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
Volker gave the Congress Welcome this morning, inviting everyone to have an enjoyable and productive few days here in Vienna
October 8, 2025 at 8:38 AM
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
Volker gave the Congress Welcome this morning, inviting everyone to have an enjoyable and productive few days here in Vienna
📢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
See page 14 for an article about new projects at our centre!
📰Sign up here: bit.ly/4pWGsNl
October 1, 2025 at 8:51 AM
📢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
See page 14 for an article about new projects at our centre!
📰Sign up here: bit.ly/4pWGsNl
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
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
September 30, 2025 at 10:26 AM
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
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
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
We're also getting research updates from the lab team on FSHD mechanisms, lab studies and imaging projects👨🔬
#FSHD
September 25, 2025 at 12:42 PM
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
We're also getting research updates from the lab team on FSHD mechanisms, lab studies and imaging projects👨🔬
#FSHD
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
September 15, 2025 at 9:13 AM
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
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
🔬 Research updates
🩺 Clinical sessions
👩⚕️ 1:1 consultations
💬 Last year: “high quality, interactive & informative”
Book now: rb.gy/gabmw7
#FSHD
August 29, 2025 at 9:22 AM
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
🔬 Research updates
🩺 Clinical sessions
👩⚕️ 1:1 consultations
💬 Last year: “high quality, interactive & informative”
Book now: rb.gy/gabmw7
#FSHD
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
#LGMD
August 14, 2025 at 12:24 PM
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
#LGMD
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
Help us understand Nemaline Myopathy to be ready for therapeutic developments
See more at bit.ly/3HeoRPc
#NemalineMyopathy #RareDisease
August 1, 2025 at 9:10 AM
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
Help us understand Nemaline Myopathy to be ready for therapeutic developments
See more at bit.ly/3HeoRPc
#NemalineMyopathy #RareDisease
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
Book your place: rb.gy/gabmw7
#FSHD #FSHDUK #FSHDEurope #WorldFSHDDay
June 20, 2025 at 2:24 PM
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
Book your place: rb.gy/gabmw7
#FSHD #FSHDUK #FSHDEurope #WorldFSHDDay
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
#RareDisease #DMD #MYO
June 12, 2025 at 9:16 AM
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
#RareDisease #DMD #MYO
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
Great to see this vital topic highlighted at such a high-profile event! 👏
#DMD #CardiacCare
June 3, 2025 at 3:03 PM
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
Great to see this vital topic highlighted at such a high-profile event! 👏
#DMD #CardiacCare
📢 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
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
May 21, 2025 at 3:22 PM
📢 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
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
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
#ICTD2025
May 20, 2025 at 12:35 PM
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
#ICTD2025
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" 🙌🫡
April 17, 2025 at 1:50 PM
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" 🙌🫡
The JWMDRC enjoyed the recent UK Neuromuscular Translational Research Conference at Newcastle University, and had a strong presence to present and discuss our work
April 17, 2025 at 1:32 PM
The JWMDRC enjoyed the recent UK Neuromuscular Translational Research Conference at Newcastle University, and had a strong presence to present and discuss our work
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
Learn more and take part in the survey here: tinyurl.com/ywbdtd6j
#BMD
April 15, 2025 at 12:22 PM
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
Learn more and take part in the survey here: tinyurl.com/ywbdtd6j
#BMD
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
This will be a mixture of talks from experts in research, clinical care, and interactive workshops.
bit.ly/3RBg8YU
April 4, 2025 at 1:24 PM
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
This will be a mixture of talks from experts in research, clinical care, and interactive workshops.
bit.ly/3RBg8YU
DMD Care UK are running online, live care workshops for health care professionals on 28th March! 👀
Find out more & register here:
jwmdrc.org/about-us/lat...
#DMD
Find out more & register here:
jwmdrc.org/about-us/lat...
#DMD
March 13, 2025 at 3:27 PM
DMD Care UK are running online, live care workshops for health care professionals on 28th March! 👀
Find out more & register here:
jwmdrc.org/about-us/lat...
#DMD
Find out more & register here:
jwmdrc.org/about-us/lat...
#DMD
Sander van Boom from LUMC explains how the #ODRL policy expression language can be used in the platform to allow patients correct permissions to access their data, at the PaLaDIn General Assembly in Rome
March 3, 2025 at 3:02 PM
Sander van Boom from LUMC explains how the #ODRL policy expression language can be used in the platform to allow patients correct permissions to access their data, at the PaLaDIn General Assembly in Rome
Joanne Lee gives an update on the Communication activities within the project at the PaLaDIn General Assembly in Rome
March 3, 2025 at 2:22 PM
Joanne Lee gives an update on the Communication activities within the project at the PaLaDIn General Assembly in Rome
Group workshop and discussion on the PaLaDIn platform, David Allison talks about the importance of keeping the patients informed when they are providing new data
March 3, 2025 at 11:59 AM
Group workshop and discussion on the PaLaDIn platform, David Allison talks about the importance of keeping the patients informed when they are providing new data
Becca Leary, Senior Project Manager for the PaLaDIn project gives an overview for the overall objectives at the General Assembly in Rome today
March 3, 2025 at 10:15 AM
Becca Leary, Senior Project Manager for the PaLaDIn project gives an overview for the overall objectives at the General Assembly in Rome today