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UK MND Research Institute @ukmndri.bsky.social · 3d

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-...

Lewis Moody: Former England captain reveals motor neurone disease diagnosis

Former England captain Lewis Moody says in an exclusive BBC interview he has

www.bbc.co.uk

UK MND Research Institute @ukmndri.bsky.social · 13d

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...

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.

www.bbc.co.uk

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UK MND Research Institute @ukmndri.bsky.social · Sep 8

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

📍 Edinburgh
📅 8–9 October
🔬 Cutting-edge MND/ALS research
🌍 Public sessions on SpeakUnique & Euan’s Guide
euanmacdonaldcentre.org/euan-macdonald-tribute-symposium-2025

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.

euanmacdonaldcentre.org

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UK MND Research Institute @ukmndri.bsky.social · Sep 4

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.

🔗Read more👇
ukmndri.org/2025/09/04/f...

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UK MND Research Institute @ukmndri.bsky.social · Sep 3

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 below👇

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

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.

ukmndri.org

Reposted by UK MND Research Institute

Longitude Prize on ALS @longitudeprize.bsky.social · Aug 5

🧠 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.

🔗 bit.ly/40Tmmsh

@ammaralchalabi.bsky.social

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.

ukmndri.org

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UK MND Research Institute @ukmndri.bsky.social · Aug 28

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...

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.

ukmndri.org

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UK MND Research Institute @ukmndri.bsky.social · Aug 20

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...

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.

ukmndri.org

UK MND Research Institute @ukmndri.bsky.social · Jul 31

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...

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.

ukmndri.org

UK MND Research Institute @ukmndri.bsky.social · Jul 28

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 all🔎

Read more 🔗 www.mndassociation.org/media/latest...

First nurse recruited into MND Association’s Research Nurse Network

The ambitious £7.2 million Research Nurse Network will give more people diagnosed with motor neurone disease (MND) the opportunity to take part in vital research

www.mndassociation.org

UK MND Research Institute @ukmndri.bsky.social · Jul 16

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 ⬇️
🔗 ukmndri.org/2025/07/16/r...

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

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.

ukmndri.org

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UK MND Research Institute @ukmndri.bsky.social · Jun 21

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.

👉 Discover more: ukmndri.org/2025/06/20/f...

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.

ukmndri.org

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UK MND Research Institute @ukmndri.bsky.social · Jun 5

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...

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.

ukmndri.org

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UK MND Research Institute @ukmndri.bsky.social · May 29

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-...

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

www.eventbrite.co.uk

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UK MND Research Institute @ukmndri.bsky.social · May 28

This week, we launched our brand new and redesigned website for the @MNDRegister.🗺️

But why is it so important?

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

📖Read more below. ukmndri.org/2025/05/28/m...

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.

ukmndri.org

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UK MND Research Institute @ukmndri.bsky.social · May 27

🚨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 below🔗
mndregister.ac.uk

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.

mndregister.ac.uk

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UK MND Research Institute @ukmndri.bsky.social · May 20

🔬RESEARCH SNAPSHOT📢

A recent study has uncovered that a breakdown in communication between structures in nerve cells can disrupt their ability to produce energy.

This could potentially lead to new treatment targets for #MND/#ALS

🔎Read more👇

ukmndri.org/2025/05/20/r...

Research reveals how disrupted energy production in cells damages neurons

A new study highlights how disrupted energy production in nerve cells is caused by disrupted cell communication, offering a potential new treatment target.

ukmndri.org

UK MND Research Institute @ukmndri.bsky.social · May 15

📄The UK MND Clinical Studies Group has released an official statement in response to the MIROCALS study results.

Find out what it means for future research into #MND / #ALS

🔗 ukmndri.org/2025/05/15/uk-mnd-clinical-studies-group-issues-statement-on-mirocals-trial-findings/

UK MND Clinical Studies Group statement on MIROCALS trial

The UK MND Clinical Studies Group has released a statement regarding the MIROCALS clinical trial results, recently published in The Lancet.

ukmndri.org

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UK MND Research Institute @ukmndri.bsky.social · Apr 17

We’re working to shape the UK’s research environment for MND to accelerate the search for a cure.🔬

Our goals:
✅ Accelerate drug discovery
✅ Better understand MND
✅ Support research participation
✅ Coordinate a national strategy

Learn more 👉 ukmndri.org/ourstory

About the UK Motor Neuron Disease Research Institute

Researchers across the country are carrying out world-leading MND research in a coordinated way to accelerate the search for a cure.

ukmndri.org

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UK MND Research Institute @ukmndri.bsky.social · Apr 14

Introducing our new Research snapshot series. Where we highlight the latest #MND studies reported by Readable Research @sheffielduni.bsky.social 🔬

First up: a look at toxic proteins in a mouse model of C9orf72-related MND and what it tells us about future treatments.

ukmndri.org/2025/04/14/r...

Understanding the production of toxic proteins in MND

A new study has explored how toxic proteins build up in the nervous system and whether future treatments might help stop them.

ukmndri.org

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Reposted by UK MND Research Institute

My Name'5 Doddie Foundation @mndoddie5.bsky.social · Apr 7

📢 Calling all researchers! Thinking of applying for our Discovery Network or Advancing Treatments Award? Don’t miss our webinar on 15 April at 12pm. Hear more about the awards, ask questions & gain insights on how to sharpen your application

Here’s the link to join 👇
us06web.zoom.us/webinar/regi...

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UK MND Research Institute @ukmndri.bsky.social · Apr 8

The international #LighthouseII trial testing HIV drug Triumeq for #MND has been halted early after an interim analysis showed no survival benefit. A full analysis will follow. Thank you to all who took part.

Read more ⬇
ukmndri.org/2025/04/07/l...

Lighthouse II study of Triumeq for MND halted after interim analysis - UKMNDRI

The international Lighthouse II clinical trial investigating the HIV drug Triumeq as a potential treatment for MND has been halted early.

ukmndri.org

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UK MND Research Institute @ukmndri.bsky.social · Mar 26

Following a successful first year of their Research Strategy, @mndoddie5.bsky.social has launched the 2025 Advancing Treatments Award & Discovery Network Award. For details & to apply, visit their Funding Opportunities page! #MND

www.myname5doddie.co.uk/research/fun...

Our Funded Research: Advancing Knowledge and Treatment for MND

Discover the cutting-edge research latest breakthroughs we fund to advance the knowledge and treatment of Motor Neurone Disease (MND)

www.myname5doddie.co.uk

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UK MND Research Institute @ukmndri.bsky.social · Mar 25

A huge thank you to everyone who took part in and supported the Darby Rimmer Foundation’s #MarchOfTheDayII🙌 Your incredible efforts help fund vital #MND research and support those affected by the disease. Thank you to all who sponsored us.

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UK MND Research Institute @ukmndri.bsky.social · Feb 27

🎥Watch this short film highlighting the important progress in #MND research from @uclbrainscience.bsky.social and @crick.ac.uk

With a $100m investment and patient safety trials expected for 2026, it offers real hope for new future treatments.

Watch below👇
vimeo.com/1055246074?r...

TURNING THE TIDE PART 2

This is "TURNING THE TIDE PART 2" by Quickfire on Vimeo, the home for high quality videos and the people who love them.

vimeo.com

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