UK MND Research Institute

10/03/2026

🧬 New Drug Candidate Enters Fast-Track MND Trial
We're pleased to announce that RT1999 (smilagenin), a promising neuroprotective therapy, has been selected for EXPERTS-ALS—our innovative clinical trial platform designed to test new treatments quickly and efficiently.

Here's why this matters:
🏥 Speed matters — Traditional trials can take years. EXPERTS-ALS uses a biomarker-led design to deliver results in 6-9 months instead.

🔬 The science is solid — RT1999 has shown meaningful protective effects in multiple ALS preclinical models and demonstrated disease-modifying signals in previous clinical studies.

🤝 Coordination works — RT1999 is now one of several candidate therapies being tested through our unified national platform, spanning 11 UK centres.

First patient expected to receive the drug on the platform by the end of 2026.
Learn more:

A new candidate treatment for motor neuron disease (MND) will be evaluated through the UK MND Research Institute's innovative EXPERTS-ALS clinical trial platform. Biotechnology company Raya Therapeutic Inc. has announced that smilagenin (RT1999), an investigational drug designed to protect nerve cel...

08/03/2026

Today, we are celebrating the women driving MND research forward, from the lab bench and clinical trials to patient advocacy and care.
Progress towards a cure is built on their vital work.
Happy 🔬

24/02/2026

Biotechnology company CervoMed has announced that its investigational drug, neflamapimod, will be evaluated through our EXPERTS-ALS platform trial. 🧪

The treatment will be tested in a small group of people living with to look for early signs that it may be having a biological effect.

EXPERTS-ALS is designed to test promising treatments more quickly by measuring neurofilament light chain (NfL), a blood marker linked to nerve cell damage.

Read more below 🔬

A potential new treatment for motor neuron disease (MND) will be evaluated through our innovative EXPERTS-ALS clinical trial platform. Biotechnology company CervoMed Inc. has announced that its investigational drug, neflamapimod, has been selected for inclusion in EXPERTS-ALS, a UK MND RI-supported

21/01/2026

Three years of progress in MND research. Across the UK, the MND Research Institute is strengthening collaboration, advancing science, and ensuring patient priorities guide every step.🔬

Key achievements include:
- Establishing a national network connecting research data and clinical studies
- Developing human cell models to better understand MND
- Relaunching and establishing the MND Register
- Embedding patient input through our Buddy System

These milestones reflect our ongoing commitment to improving outcomes for people living with MND.

Learn more:

As we enter the next phase of funding, it’s important to look back on what we’ve achieved together and why it matters for people living with motor neuron disease (MND). Every step forward brings us closer to improving lives today and finding effective treatments for tomorrow. Our mission has alw...

12/12/2025

Great news! Our biosampling platform has recruited 212 people living with MND, surpassing our target of 200. 🎉

These samples are key to biomarker research, helping us uncover new treatment targets and improve patient care.

Find out why this matters below 👇

The UK MND RI’s biosampling platform has now recruited 212 people living with MND, exceeding our original target of 200, marking a significant milestone in our research programme and a key step forward in our mission: to find new treatments for MND. Building a foundation for biomarker-driven resea...

03/12/2025

New research reveals what people with / need when deciding on genetic testing: clear info, implications for family & tailored support.📃

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

Read more🔗

A new study has explored the experiences of people with motor neuron disease (MND) when deciding whether to have genetic testing. The findings highlight the importance of clear information and tailored support to help individuals make informed choices about testing and its implications for themselve...

27/11/2025

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 / .

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 patient / carer groups. Only de-identified data will also be disseminated through scientific publication,....

24/11/2025

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 / research community.

🔗If you haven't joined, sign up below!

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 simple for people living with MND to join studies, share their experiences, and help accelerate discov...

14/11/2025

We're advancing our mission to find effective treatments for / by repurposing drugs that are already approved for other conditions.🔬

Why does this matter? 🧠 Developing brand-new drugs can take over a decade and cost billions. But repurposed drugs can shortcut many of those early hurdles, because we already know a lot about their safety and how they work in the body.

Our team is backing this strategy through platform trials like EXPERTS-ALS and MND SMART, which test multiple treatments simultaneously.

We are committed to pushing this work forward, ensuring the move from lab to clinic is as fast and safe as possible

Read more 👇

We have a clear mission: to accelerate the discovery of effective treatments for motor neuron disease (MND). To do this, we’re pursuing a range of scientific strategies, including one that may sound simple but holds great potential: repurposing existing drugs. Repurposed drugs, already approved fo...

27/10/2025

Fantastic new blog series from MND Association! Life in the Lab gives a real glimpse into the fantastic work going on right now in research. Highly recommend a read 👇

🔗 mndresearch.blog/life-in-the-lab/

Our Research team has just launched a brand new blog series – Life in the Lab. 👩‍🔬

We’re on a mission to shine a light on the incredible work happening in MND research. This new series takes you behind the scenes to show what life in the lab is really like, demonstrating the shared urgency, hope and optimism felt by MND researchers and people affected by MND.

Every MND researcher is working on a different piece of the bigger MND puzzle. When these pieces begin to fit together, this is when we see progress!

You can read Life in the Lab now!👉 mndresearch.blog/life-in-the-lab/

21/10/2025

A UK-wide study analysing data from over 340,000 adults has found that people who experience a traumatic brain injury may face a higher short-term risk of developing MND.

However, this increased risk appears temporary, suggesting that, in some cases, injury could occur as an early effect of the disease rather than a cause.

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A new UK-wide study has found that people who experience a traumatic brain injury may face a higher short-term risk of developing MND. However, this increased risk appears to be temporary, limited to the first two years after injury, suggesting that rather than causing the disease, traumatic brain i...

04/09/2025

Fatigue in MND: New study reveals its prevalence, impact and trajectories

A major study involving over 1,000 people with motor neuron disease has found that fatigue is nearly universal, with varying severity and distinct symptom patterns. The research underscores the need for holistic, personalised treatment and can inform future research care.

📖Read the full story:

A new UK-wide study has found that fatigue is one of the most common and burdensome symptoms experienced by people living with motor neuron disease (MND), affecting nearly all participants in the research cohort. These findings not only shed light on the prevalence of fatigue in MND but also offer n...