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Disappointing news but I’m still hopeful that targeted gene therapy is the future even for those without gene mutations in #als #mnd

'By the time that you watch this I will no longer be here' A poignant final message from the Leeds Rhinos legend and MND campaigner recorded before his death for a special BBC documentary 'There's Only One Rob Burrow' BBC One BBC iPlayer

Just met Alex who’s keen to work with us on our new National Institute for Health and Care Research funded study to deliver better Better NIV for MND . Within minutes I could tell she’s a real champion for her patients and a real expert in her field. So many amazing staff in Home Mechanical Ventilation in Partnership

Do you have experience living with MND or helping someone who does? We are looking for help shape our new UK study trying to improve the way people use breathing machines. More info here. MND Research My Name'5 Doddie Foundation Paul Wicks South Yorkshire MNDA Patients United2EndMND sites.google.com/sheffield.ac.u…

Junior doctors pay has been cut by 26.8% since 2008. A doctor can be working on £15/hr, with 100k worth of student debt. We are asking to go to £20/hr. Is it any wonder that doctors are leaving the NHS due to not feeling valued? #payrestoration

Researchers, including @drestherhobson and Emily Mayberry (she/her), from Neuroscience Institute would like to hear from people with #MND and their carers about their emotional experiences of MND. The study aims to help improve emotional support for people with MND. More info: mndassociation.org/research/get-i…

Congratulations Sally. A much deserved honour for your dedication and leadership.

Boris Johnson

Delighted to share: Measuring Health-Related Quality of Life in Amyotrophic Lateral Sclerosis | Neurology neurology.org/doi/full/10.12… Thanks to our collaborators who worked with us to finalise the framework. Chris McDermott Phil Powell 🦋 @philapowell.bsky.social MND Association SCHARR Alys Griffiths

Our new paper tells researchers what things are important to measure when we think about quality of life in people living with the #ALS #MND #encals funded by National Institute for Health and Care Research and NIHR Sheffield Biomedical Research Centre neurology.org/doi/10.1212/WN…

Our systematic review & new framework are out! We examined health-related quality of life for people with #ALS #MND and developed a new conceptual framework. Full text in Neurology Journal: neurology.org/doi/pdf/10.121… Thanks to National Institute for Health and Care Research & MND Association for support with this work.

Do you or someone you know have MND? Would you like to help us do a short interview to help us know more about how to care for people experiencing emotional distress? South Yorkshire MNDA Ammar Al-Chalabi Chris McDermott My Name'5 Doddie Foundation Darby Rimmer MND Foundation mndassociation.org/research/get-i…

And we’re off! 🚶🚶‍♀️ Good luck to the 450 staff, students, alumni and friends taking part in the #TUOSBigWalk today to raise money for motor neurone disease research at the University of Sheffield. Please help us cheer them on. 👏👏👏 Donate here 👇 justgiving.com/campaign/bigwa…

“You’re changing the conversation from care to cure…” Neuroscience Institute’s Chris McDermott putting fire in the bellies of our walkers with a reminder of how they’re helping bring an MND cure closer. #TUOSBigWalk

We'd like to congratulate Prof Heidi Christensen and Dan Blackburn who have been awarded the Made with Patients Equality, Diversity and Inclusivity award from the Patient Engagement Open Forum. The award recognises their collaborative work with CognoSpeak. sheffield.ac.uk/cs/news/sheffi….

Great to see amazing research in MND funded by MND Scotland by Brittany Ellis from Neuroscience Institute and NIHR Sheffield Biomedical Research Centre at the medical research day. Another step forward to finding a cure

Can the MND/ALS community can help? I would like some photos to use in educational materials & websites of people of colour with MND/ALS using NIV/BiPAP. I want to make our pictures more diverse. Is anyone willing to share a picture of themselves? DMs open. ALS Advocacy

The next round of MND Association/@NIHRcommunity capacity-building schemes is opening on 16 October for the NIHR MND Association Doctoral Fellowship, which is part of the NIHR Doctoral Fellowship Round 13 funding opportunity.📣 Apply here below👇 nihr.ac.uk/funding/doctor…

📢Latest news 📢 Researchers Neuroscience Institute have launched a new remote platform to allow more people to take part in #MND research. It will bring information about all UK MND studies into one place and offer remote monitoring to limit traveling for research. The platform forms

Help us make a difference to MND Care. Living with MND or caring for someone who is? We want to know how to improve psychological support for people with MND & their carers. You can help us develop better services. bit.ly/iDeliver-survey