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UK MND Research Institute

@ukmndri.bsky.social

A national network of MND centres that work together to understand how #MND happens, what treatment works, and test possible treatments in clinical trials.

133 Followers  |  14 Following  |  48 Posts  |  Joined: 31.10.2024
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Posts by UK MND Research Institute (@ukmndri.bsky.social)

We're thrilled that the drug Neflamapimod has been selected for evaluation in our EXPERTS-ALS platform. πŸ§ͺ

The drug will be tested on a small cohort of people living with ALS

Read more belowπŸ”¬
ukmndri.org/2026/02/24/n...

24.02.2026 13:59 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Industry partners are vital collaborators in our mission to find crucial new treatments for #MND/#ALS.

Our co-director, @ammaralchalabi.bsky.social, teamed up with Raya Therapeutics at TRICALS to lead a discussion on Repurposing and Combination Therapies.

Read more πŸ‘‡

ukmndri.org/2025/11/13/r...

16.02.2026 16:58 β€” πŸ‘ 1    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
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We're delighted to be attending #TRICALS Masterclass this year in Amsterdam.

It's always fantastic to meet up with our international colleagues and collaborators to discuss how we can best accelerate #ALS clinical drug development.

12.02.2026 15:49 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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UK MND RI: Three Years of Progress in MND Research Celebrating three years in MND research: building infrastructure, accelerating trials, and driving progress toward effective treatments.

Three years after our launch, we’ve worked tirelessly to understand how and why MND occurs, identify promising treatments, and test them in clinical trials.

Read about what we've achieved, together, in our first three years here: ukmndri.org/2025/12/17/u...

21.01.2026 13:43 β€” πŸ‘ 3    πŸ” 2    πŸ’¬ 0    πŸ“Œ 1
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UK MND RI biosampling platform passes 200 recruits Our biosampling platform has recruited 212 participants, exceeding its target and advancing biomarker research..

πŸŽ‰We're thrilled to announce that our biosampling platform has recruited 212 participants, surpassing our target of 200.

This work will be vital in bringing us closer to new and more personalised treatments for #MND/#ALS.πŸ”Ž

ukmndri.org/2025/12/12/b...

12.12.2025 16:14 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Biomarkers in MND Clinical Trials A new systematic review from KCL highlights how biomarkers, such as NfL, are enabling earlier treatment assessments and personalised medicine.

How are biomarkers are changing #ALS/#MND research?πŸ”Ž

A new review from King's College London shows how specific biomarkers, such as neurofilament light chain (NfL), can accelerate trials and enable personalised medicine.

πŸ”— Read more πŸ‘‡

ukmndri.org/2025/12/05/b...

05.12.2025 13:57 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Genetic Testing: What People Need to Make Informed Decisions A new study reveals what people with MND need when deciding on genetic testing, including clear information and tailored support.

New research reveals what people with #MND/#ALS need when deciding on genetic testing: clear info, implications for family & tailored support.πŸ“ƒ

This data can help inform decision aids to assist people when thinking about genetic testing.

Read moreπŸ”—

ukmndri.org/2025/12/03/g...

03.12.2025 12:48 β€” πŸ‘ 2    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
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MND Research Papers - MND Register Findings from the MND Register project will be published here, as well as via a patient newsletter. Results will also be disseminated through scientific publication, conference presentation and patien...

Our posters from ENCALS 2025 on findings from the MND Register are now published on our website.

Click the link below to read about the epidemiological insights, incidence and prevalence, as well as gender differences in #MND/#ALS.

mndregister.ac.uk/research-pap...

27.11.2025 12:41 β€” πŸ‘ 2    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
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Get involved in MND research from home - UKMNDRI Get involved You can now take part in MND research without having to travel. In collaboration with researchers at the University of Sheffield, we’ve created a secure online platform that makes it s...

We've hit 100 sign-ups to our Remote Research Platform!

Thank you to everyone who has signed up; together, we’re building a more inclusive #MND/#ALS research community.

πŸ”—If you haven't joined, sign up below!

ukmndri.org/research/und...

21.11.2025 11:06 β€” πŸ‘ 2    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Repurposed Drugs: Accelerating MND Treatment Discovery Discover how repurposed drugs are helping accelerate the search for effective treatments for MND through innovative UK research.

Drug development is a complex and costly process.

By using medicines approved for other conditions, we can overcome barriers in drug development.

Read our blog explaining why we believe repurposed drugs could help us find new treatments for #MND/#ALS.

ukmndri.org/2025/11/13/r...

14.11.2025 09:34 β€” πŸ‘ 3    πŸ” 1    πŸ’¬ 0    πŸ“Œ 1
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Yesterday, we attended @mndoddie5.bsky.social's Discovery Network Showcase 2025.

Researchers, clinicians, industry partners, and people affected by #MND/#ALS discussed how the network can drive forward progress in better understanding MND and the development of new treatments.

13.11.2025 13:58 β€” πŸ‘ 5    πŸ” 1    πŸ’¬ 0    πŸ“Œ 1
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Our Co-Director, Prof. @ammaralchalabi.bsky.social, gave a fantastic talk yesterday, hosted by @mndassoc.bsky.social, on #MND/#ALS genetics, why they matter and how discoveries are shaping new treatments.

Thank you to everyone who joined in person & online!
#MNDresearch #genetics

05.11.2025 20:04 β€” πŸ‘ 3    πŸ” 2    πŸ’¬ 0    πŸ“Œ 0
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Cellular changes in sporadic ALS may reveal new treatment targets A new study suggests that MND may slow molecular transport and cell growth before nerve cells die. This could help identify new therapeutic targets.

New research finds that #MND/#ALS may slow molecular transport and nerve cell growth before cells begin to die.

These early changes could hold clues to how the disease starts and how to treat it.

ukmndri.org/2025/10/24/e...

24.10.2025 15:56 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Traumatic brain injury linked to short-term MND risk A new study finds traumatic brain injury linked to a short-term rise in MND risk, suggesting this may reflect early disease signs, not cause them.

A new UK-wide study finds that people who experience a traumatic brain injury may face a higher short-term risk of developing MND.

This risk appears temporary, suggesting injury may sometimes be an early consequence of undiagnosed disease.

Read moreπŸ‘‡
ukmndri.org/2025/10/21/t...

21.10.2025 13:33 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Lewis Moody: Former England captain reveals motor neurone disease diagnosis Former England captain Lewis Moody says in an exclusive BBC interview he has

We’re deeply sorry to hear that former England rugby captain Lewis Moody has been diagnosed with MND.

His courage in sharing his diagnosis will raise vital awareness.

Our thoughts are with Lewis and his family.

We must find an effective treatment for #ALS/#MND.

www.bbc.co.uk/sport/rugby-...

06.10.2025 08:47 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Huntington's disease successfully treated for first time One of the most devastating diseases finally has a treatment that can slow its progression and transform lives, tearful doctors tell BBC.

This is fantastic news and highlights the importance of consistently funding collaborative science in neurodegenerative diseases.

We are committed to doing the same for #MND/#ALS and finding new ways to successfully treat the disease.

www.bbc.co.uk/news/article...

26.09.2025 10:27 β€” πŸ‘ 0    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
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A tribute to Euan MacDonald: celebrating the Euan MacDonald Centre and Euan's legacy A 1.5-day symposium showcasing current MND research, and a celebration of Euan's legacy, including Euan's Guide and SpeakUnique.

Sign up now to a special symposium in memory of Euan MacDonald MBE, hosted by the Euan MacDonald Centre for #MND Research.

πŸ“ Edinburgh
πŸ“… 8–9 October
πŸ”¬ Cutting-edge MND/ALS research
🌍 Public sessions on SpeakUnique & Euan’s Guide
euanmacdonaldcentre.org/euan-macdonald-tribute-symposium-2025

08.09.2025 11:16 β€” πŸ‘ 0    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0

Fatigue affects nearly all people with #MND/#ALS, yet it's often overlooked. A new UK-wide study reveals how fatigue evolves, its severity, and its link to other symptoms. This can inform future research and care.

πŸ”—Read moreπŸ‘‡
ukmndri.org/2025/09/04/f...

04.09.2025 11:33 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Raya Therapeutics compound selected for EXPERTS-ALS platform Raya Therapeutic’s ALS/MND compound joins the UK EXPERTS-ALS trial, aiming to accelerate development of a new promising treatment.

One of Raya Therapeutic's compounds has been selected for our EXPERTS-ALS programme. A pioneering initiative designed to fast-track promising treatments for #ALS/#MND.

Read more about the story and why it is so significant belowπŸ‘‡

ukmndri.org/2025/09/03/r...

03.09.2025 12:46 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Longitude Prize launched to accelerate AI-driven drug discovery A new international challenge prize has been launched to transform drug discovery for ALS, the most common form of MND through AI.

🧠 The @ukmndri.bsky.social is an #MND powerhouse, accelerating progress towards new treatments and, ultimately, a cure.

Read their article about how the #LongitudePrizeOnALS could be a game-changer for drug discovery in neurodegenerative diseases.

πŸ”— bit.ly/40Tmmsh

@ammaralchalabi.bsky.social

05.08.2025 09:16 β€” πŸ‘ 3    πŸ” 2    πŸ’¬ 0    πŸ“Œ 0
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Protein signature could predict ALS a decade early A new study has identified a blood-based protein signature that may predict ALS up to ten years before symptoms appear.

A new study has identified a blood-based biomarker panel that can detect #ALS up to a decade before symptoms appear.

Using machine learning and protein profiling, researchers found 33 proteins that distinguish ALS from other conditions.

ukmndri.org/2025/08/28/2...

28.08.2025 13:40 β€” πŸ‘ 2    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
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Finger-prick blood test could offer less invasive monitoring in MND A simple finger-prick blood test could revolutionise how motor neuron disease and other neurological conditions are monitored.

A simple finger-prick blood test could transform how #MND/#ALS is monitored.

New research from @ucl.ac.uk shows that NfL levels from capillary samples match those from traditional blood draws, suggesting a more convenient and less invasive way to sample blood.

ukmndri.org/2025/08/20/f...

20.08.2025 11:45 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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First treatment approved in the UK for rare genetic form of MND - UKMNDRI The MHRA has approved the use of tofersen, the first licensed treatment in the UK for MND caused by a variation in the SOD1 gene.

The first treatment for a form of #MND/#ALS has been approved in the UK.

#Tofersen is authorised for SOD1 MND, demonstrating the potential of gene-targeted therapies.

UKMNDRI RI partners @sheffielduni.bsky.social & @kingsioppn.bsky.social contributed to the trials.

ukmndri.org/2025/07/31/f...

31.07.2025 14:17 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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First nurse recruited into MND Association’s Research Nurse Network The ambitious Β£7.2 million Research Nurse Network will give more people diagnosed with motor neurone disease (MND) the opportunity to take part in vital research

We're thrilled to see the first research nurse recruited to the @mndassoc.bsky.social’s new #MND Research Nurse Network.

The network will be essential in providing the support and expertise needed to create equitable access to trials for allπŸ”Ž

Read more πŸ”— www.mndassociation.org/media/latest...

28.07.2025 10:58 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Could sleep changes signal the early stages of MND or FTD? Research has found that disrupted sleep may offer some clues to possible early warning signs of the ALS or FTD.

New research has examined how disrupted sleep patterns may signal the early stages of #MND / #ALS or FTD, providing clues to earlier detection.

Read more ⬇️
πŸ”— ukmndri.org/2025/07/16/r...

This post is part of our Research Snapshot series, powered by Readable Research at @sheffielduni.bsky.social

16.07.2025 13:23 β€” πŸ‘ 3    πŸ” 2    πŸ’¬ 0    πŸ“Œ 0
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How our translational research will find new treatments for MND On MND Awareness Day, we’re spotlighting the projects accelerating real progress and explaining why translational research is key.

Today is #MNDAwarenessDay, a moment to highlight the hidden realities of living with #MND.

Our translational research projects aim to find treatments for MND through a national, coordinated approach.

πŸ‘‰ Discover more: ukmndri.org/2025/06/20/f...

21.06.2025 11:57 β€” πŸ‘ 2    πŸ” 1    πŸ’¬ 0    πŸ“Œ 1
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Our latest findings from the MND Register at ENCALS 2025 - UKMNDRI Read about some of our latest findings from the MND Register that were showcased at the ENCALS Meeting 2025 in Turin, Italy.

Read about our latest findings from the @MNDRegister showcased at the @ENCALS Meeting 2025.🌍

Findings ranged from a new #MND/#ALS incidence and prevalence analysis to clinical characteristics and outcomes.

Read more here⬇️

ukmndri.org/2025/06/04/m...

05.06.2025 09:35 β€” πŸ‘ 3    πŸ” 3    πŸ’¬ 0    πŸ“Œ 0
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UCL Queen Square MND Centre Sixth ALS/MND International Symposium International Conference, in partnership with the UK MND Research Institute, on ALS / MND - TRANSLATING TARGETS TO THERAPIES

We are pleased to announce that the @ucl Queen Square Motor Neuron Disease Centre Sixth Hybrid #ALS/#MND International Symposium in Partnership will be held on Friday 5/9/25.

The theme is Translating Targets to Therapies.

To register, click below⬇️

www.eventbrite.co.uk/e/ucl-queen-...

29.05.2025 09:05 β€” πŸ‘ 3    πŸ” 5    πŸ’¬ 0    πŸ“Œ 1
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Why our MND Register is a vital resource for MND research - UKMNDRI The new MND Register website helps track MND across the UK and support research into who is affected, how, and why. Visit to learn more.

This week, we launched our brand new and redesigned website for the @MNDRegister.πŸ—ΊοΈ

But why is it so important?

Find out how this vital resource is helping researchers understand who is affected by #MND/#ALS and why.

πŸ“–Read more below. ukmndri.org/2025/05/28/m...

28.05.2025 11:58 β€” πŸ‘ 1    πŸ” 2    πŸ’¬ 0    πŸ“Œ 0
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MND Register for England, Wales and Northern Ireland The primary objective of the MND Register is to build a centralised database of patients with MND across England, Wales and Northern Ireland.

🚨We’ve launched a new home for the @MNDRegister!

The MND Register is the first comprehensive source of information about people with #MND/#ALS.

We hope that by counting every person with MND, we can learn more about the disease.

Learn more belowπŸ”—
mndregister.ac.uk

27.05.2025 07:57 β€” πŸ‘ 2    πŸ” 2    πŸ’¬ 0    πŸ“Œ 0