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Robert Muní Lofra

@rmunil.bsky.social
115 followers 169 following 6 posts

PT PhD, Consultant Physiotherapist, Honorary Clinical Senior Lecturer at @jwmdrc.bsky.social John Walton Muscular Dystrophy Research Centre-Newcastle Upon Tyne

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Reposted by Robert Muní Lofra
Annemieke Aartsma-Rus @oligogirl.bsky.social · 15/04/2026
#apaperaday from the office with a new gatchapon bird. Today's pick is by Riguzzi et al, from Journal of neurology neurosurgery and psychiatry on a huge natural history study in Becker muscular patients focusing on respiratory function from @jwmdrc.bsky.social doi 10.1136/jnnp-2025-337953
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Reposted by Robert Muní Lofra
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...
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Reposted by Robert Muní Lofra
Robert Muní Lofra @rmunil.bsky.social · 14/03/2026
Very proud to share our latest publication. Great to see quality in life has a non linear relation to mobility levels. We can make the difference despite disease progression @jwmdrc.bsky.social 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...
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Robert Muní Lofra @rmunil.bsky.social · 14/03/2026
Very proud to share our latest publication. Great to see quality in life has a non linear relation to mobility levels. We can make the difference despite disease progression @jwmdrc.bsky.social 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...
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Reposted by Robert Muní Lofra
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
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Reposted by Robert Muní Lofra
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
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Reposted by Robert Muní Lofra
Nature Portfolio @natureportfolio.nature.com · 20/02/2026
Turning on the ‘For You’ algorithm on X may shift users’ political opinions towards more conservative views, reports a paper in Nature. These effects are shown to persist even after users return to a chronological feed. 🧪
go.nature.com
The political effects of X’s feed algorithm - Nature
Among users initially on a chronological feed, 7 weeks of exposure to X’s algorithmic feed in 2023 shifted political attitudes and account-following behaviour in a more conservative direction compared with those remaining on a chronological feed, whereas switching the feed setting in the opposite direction, from algorithmic to chronological, had no effect.
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Albert Vilella, PhD. @albertvilella.bsky.social · 12/02/2026
#bioinformatics #statistics #memes #bluesci
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lgmdawareness.bsky.social @lgmdawareness.bsky.social · 19/01/2026
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Reposted by Robert Muní Lofra
Chi Onwurah @chionwurah.bsky.social · 15/01/2026
Newcastle's Centre for Life opens up the world of science to young people from all walks of life. As an engineer from an impoverished background, I know how vital science and discovery centres are in sparking curiosity and opportunity across the North East.
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Reposted by Robert Muní Lofra
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
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Reposted by Robert Muní Lofra
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
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Reposted by Robert Muní Lofra
Nature Portfolio @natureportfolio.nature.com · 27/10/2025
Women may experience a three-fold reduction in mortality risk from coronary heart diseases, when following recommended exercise guidelines, compared to men, according to a study in Nature Cardiovascular Research. go.nature.com/47t8eZq #medsky 🧪
This is figure 4, which shows a central illustration of the study design and summary of findings.
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World Muscle Society @worldmusclesociety.org · 09/10/2025
Did you see the highlights of our first day at #WMS2025? We had an incredible demonstration from the Austrian national Powerchair Football team and welcomed 1,500 delegates to the Austria Center Vienna for our 30th anniversary Congress. Watch here: youtu.be/sjqxyXVD0NY?...
youtu.be
WMS 2025 - highlights from the opening day
YouTube video by World Muscle Society
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Reposted by Robert Muní Lofra
World Muscle Society @worldmusclesociety.org · 09/10/2025
Wednesday 8th October was our #WMS2025 Congress plenary day, but the science didn't start until after the celebrations. To mark our 30th anniversary Congress. There was cake, and we shared a very special video to commemorate the occasion. Here are our highlights from the day. youtu.be/viPpisDyY9Y
youtu.be
WMS 2025 - highlights from Wednesday 8th October
Wednesday 8th October was the first of our #WMS2025 Congress plenary days, but the science didn't start until after the celebrations. To mark our 30th anniversary Congress, we heard from the current…
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Reposted by Robert Muní Lofra
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
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Reposted by Robert Muní Lofra
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
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Reposted by Robert Muní Lofra
SMA Europe @sma-europe.bsky.social · 01/08/2025
🔬This Spinal Muscular Atrophy Awareness Month, from SMA Europe, we are Connecting the Dots! Research in SMA is vital. Did you ever wonder how research can have a real impact on the lives of people who live with SMA? Only together, WeAreOne #SMAAwareness #ConnectingTheDots #SpinalMuscularAtrophy
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The Guardian @theguardian.com · 15/07/2025
Disabled people want to live a full life. Instead, we’re forced to scrap over our right to food and a wash | Frances Ryan
theguardian.com
Disabled people want to live a full life. Instead, we’re forced to scrap over our right to food and a wash | Frances Ryan
Britain’s political and media class advocate policies that leave disabled people hungry and dirty. Why are we expected to settle for this, asks Guardian columnist Frances Ryan
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Robert Muní Lofra @rmunil.bsky.social · 08/07/2025
Check out our latest publication @jwmdrc.bsky.social pubmed.ncbi.nlm.nih.gov/40582339/ Very proud of the work done by the team to improve the understanding of the care needs of our patients. Next steps … how do we get our patients to be more active?
pubmed.ncbi.nlm.nih.gov
Levels of exercise exposure among people living with neuromuscular disorders: lessons learned from real-world data - PubMed
There is growing evidence on safety and efficacy of exercise in neuromuscular diseases. We sought to establish the levels of exercise exposure for people living with NMD and its association with mobil...
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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
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Reposted by Robert Muní Lofra
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
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Reposted by Robert Muní Lofra
British Myology Society @britishmyology.bsky.social · 18/06/2025
Join Oxford Paediatrics study on Nemaline Myopathy. See more about the trial at: www.musculardystrophyuk.org/research/cur...
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Reposted by Robert Muní Lofra
Chartered Society of Physiotherapy @thecsp.bsky.social · 21/05/2025
'The NHS wouldn’t tell a surgeon to stop an operation halfway through. 'A pharmacist wouldn’t hand out 40% of a course of antibiotics. 'So why is it OK for patients to be denied a full course of rehabilitation?' @sarahazzard.bsky.social in the Guardian: www.theguardian.com/society/2025...
theguardian.com
A fine balance of hope and reality in stroke recovery | Letters
Letters: Dr Jessica Beavan on the challenges of providing effective treatment and support to patients, and Sara Hazzard on the stark impact of inadequate physiotherapy services. Plus letters from Sall...
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Reposted by Robert Muní Lofra
John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 04/04/2025
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
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Robert Muní Lofra @rmunil.bsky.social · 23/03/2025
Very proud to share our last publication to help improving understanding of the assessment of disease progression in SMA @jwmdrc.bsky.social @mdukcharity.bsky.social @curesma.bsky.social www.nmd-journal.com/action/showP...
nmd-journal.com
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Northumbria University @northumbriauni.bsky.social · 17/03/2025
There are many things that make Newcastle great... and the Toon Army were absolutely incredible yesterday! 🖤🤍🖤🤍 Huge well done to all @newcastleunited.com - Carabao Cup Winners 2025 ⚽️🏆
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Albert Vilella, PhD. @albertvilella.bsky.social · 16/03/2025
Clowns
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Newcastle University @newcastleuni.bsky.social · 16/03/2025
Howay the lads! ⚽ #MyNCLPics #WeAreNCL #NUFC #AngelOfTheNorth #CarabaoCup
The angel of the north wearing a Newcastle United football shirt against a blue skyThe angel of the north wearing a Newcastle United football shirt against a blue skyThe angel of the north wearing a Newcastle United football shirt against a blue skyThe angel of the north wearing a Newcastle United football shirt against a blue sky
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John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 03/03/2025
Becca Leary, Senior Project Manager for the PaLaDIn project gives an overview for the overall objectives at the General Assembly in Rome today
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Reposted by Robert Muní Lofra
JWMDRC Patient Registries @jwmdrc-registries.bsky.social · 12/02/2025
The curators' meeting was also a fantastic opportunity for our newest team members, Data Coordinators Lucy and Aleks, to learn more about the network and meet the rest of the TGDOC family. They presented registry posters, made lots of valuable connections and represented our team brilliantly! 👏🧬
Data Coordinator Lucy with registry posters Data Coordinator Aleks with registry posters
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John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 07/02/2025
We have a new social media account on BlueSky alongside our previous accounts, so please follow us for updates on the translational research we do that brings diagnosis, care and therapy to people living with neuromuscular diseases! 🙌
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John Walton Muscular Dystrophy Research Centre @jwmdrc.bsky.social · 07/02/2025
We are celebrating a publication describing the efficacy of a new MRI sequence call sodium MRI to detect early damage in skeletal muscle of individuals after an exercise. This is a collaboration between MRI centre & JWMDRC funded by Jain Foundation through the COS study. 🙌 bit.ly/4gviylW
bit.ly
Rapid Quantitative Assessment of Muscle Sodium Dynamics After Exercise Using 23Na‐MRI in Dysferlinopathy and Healthy Controls
You have to enable JavaScript in your browser's settings in order to use the eReader.
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Chartered Society of Physiotherapy @thecsp.bsky.social · 31/01/2025
Children in UK suffering ‘irreversible harm’ due to physiotherapy delays - The Guardian highlights the stark reality for children and their families who are facing unacceptable long waiting lists for treatment. #RightToRehab
theguardian.com
Children in UK suffering ‘irreversible harm’ due to physiotherapy delays
Teenagers face lifelong trauma from untreated chronic pain while children as young as four waiting 18 months, say physiotherapists
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Chartered Society of Physiotherapy @thecsp.bsky.social · 31/01/2025
'Sadly, long wait lists and limited access to physiotherapy, due to staffing shortages and shortages of suitable rehab spaces are causing irreversible harm.' 94% of paediatric physiotherapists are concerned about their patients accessing the rehab treatment they need. #RightToRehab
csp.org.uk
Paediatric physios warn long waits causing 'irreversible harm' to children
A survey has revealed that 94 per cent of paediatric physiotherapists are concerned about their patients accessing the rehab treatment they need.
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JWMDRC Patient Registries @jwmdrc-registries.bsky.social · 31/01/2025
#MuscularDystrophy #UK (@mdukcharity.bsky.social 👋) have launched a patient survey to help develop their new strategy. 🗣️ Ensure your #PatientVoice is heard! Complete the survey here before it closes on 17 Feb: loom.ly/F45mAwg 📝 #Neuromuscular #NMD #MyotonicDystrophy #DM1 #FSHD #SMA
Image with the words 'What do YOU want the world to look like for people with a muscle wasting and weakening condition in 10 years?'
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JWMDRC Patient Registries @jwmdrc-registries.bsky.social · 30/01/2025
Home to our patient registries team, and a world-leading centre of #MuscularDystrophy research, The John Walton Muscular Dystrophy Research Centre (JWMDRC) is now on Bluesky here @jwmdrc.bsky.social Please follow JWMDRC for news, events and information on #translational #neuromuscular #research
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Robert Muní Lofra @rmunil.bsky.social · 25/01/2025
Comencem #bluesky Let’s start #bluesky
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