Prof Janine Kirby

Sign up for Doddie Aid 2026 now‼️ doddieaid.com

We have invested almost £3m to help MND clinical trial centres recruit the staff they need.

When Doddie was diagnosed, he was frustrated at the lack of clinical trials in the UK. Today’s landscape is significantly different and we’re proud to support that 👇
www.myname5doddie.co.uk/whats-on/art...

We’ve spent £2 million on nine new MND research projects through our Advancing Treatments and Catalyst Awards, which all aim to accelerate the search for effective treatments 🔬

Find out more about the projects here 👇
www.myname5doddie.co.uk/whats-on/art...

A plasma proteomics-based candidate biomarker panel predictive of amyotrophic lateral sclerosis - Nature Medicine Plasma proteomic analysis of presymptomatic individuals with amyotrophic lateral sclerosis identifies novel disease-associated proteins and enables the development of an accurate diagnostic biomarker ...

This is a landmark paper showing a predictive test for #ALS #MND up to 40 years before onset and able to predict age of onset. Huge implications

www.nature.com/articles/s41...

Great couple of days attending the School of Medicine and Population Health graduations of PGR and MBChB students @sheffielduni.bsky.social

@lifearc.bsky.social are now on Bluesky

We’re proud to feature in the AMRC's new report on translating research for our jointly funded work with Motor Neurone Disease Association and LifeArc 🤝
@amrc-uk.bsky.social @mndassoc.bsky.social @lifearc.bsky.social

You can view the full report here 👇
bit.ly/4lTL049

Great to see this work come to fruition and highlighted by @sheffielduni.bsky.social

Efficacy and safety of low-dose IL-2 as an add-on therapy to riluzole (MIROCALS): a phase 2b, double-blind, randomised, placebo-controlled trial With this treatment schedule, IL-2LD resulted in a non-significant reduction in mortality in the primary unadjusted analysis. However, the difference between the results of unadjusted and adjusted ana...

Our paper describing the results of the MIROCALS trial of low-dose interleukin-2 in #ALS #MND is out in the Lancet @thelancet.bsky.social

Open access

Read it here:
www.thelancet.com/journals/lan...

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.

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...

Did you catch Hamish, Kenny Logan & our Director of Research, Dr Madina Kara, on BBC Breakfast this morning?📺

Kenny unveiled the plans for his Doddie’s Lions Challenge, a 555-mile cycle round Ireland, with the aim to raise over £500,000 for the Foundation & Irish Motor Neurone Disease Association

Check out our new review of C9orf72 ALS in @thelancetneuro.bsky.social with Sarah Mizielinska, Rosa Rademakers and others! Was fun to co-write but tough to collate such incredible progress into a one article: authors.elsevier.com/c/1ke765FFzL...

Rare genetic disorder treated in womb for the first time The child, who is now almost three years old, shows no signs of the often fatal motor neuron disease.

SMA treated in the womb
www.nature.com/articles/d41...

Welcome to Brian Dickie @bd365.bsky.social on BlueSky! Please give him a follow if you work on neurodegeneration, especially ALS/MND!

An update on Ellorarxine - UKMNDRI As neurologists specialising in the care of people living with motor neuron disease, we are receiving increasing enquiries about a drug called ellorarxine. Many of our patients are asking for access, ...

Many people with #MND are asking about ellorarxine.

How are new drugs approved, and what does the evidence say about this research and drug? 🔬

We break down the drug development process and how we’re working to speed it up.

ukmndri.org/2025/02/07/a...

Blood level of neurofilament light chain as a biomarker for neurological disorders - PubMed Blood level of neurofilament light chain as a biomarker for neurological disorders

Perspective, led by Martin, on the current application and future potential for blood neurofilament light chain level in neurological disorders, including #ALS pubmed.ncbi.nlm.nih.gov/39845125/

Showcasing our groundbreaking EXPERTS-ALS study for MND treatments - UKMNDRI EXPERTS-ALS is a ground-breaking initiative to accelerate the development of new treatments for amyotrophic lateral sclerosis (ALS). We’re excited to showcase one of our flagship projects, the EXPErim...

🚨We're working to accelerate the development of new treatments for #ALS.

Read more about how our pioneering study, EXPERTS-ALS, aims to rapidly screen potential drugs for evidence that they can slow progression in people with ALS.

🔗 Find out more 👇 ukmndri.org/2025/01/29/s...

Countdown to a cure Get access to 'Countdown to a cure' which provides an overview of the innovative research the MND Association is funding, the increased collaboration across MND research, and a look at new and improve...

Take a look at the 'Countdown to a Cure' report which demonstrates some of the exciting and promising translational UK research being funded by the MND Association.
www.mndassociation.org/research/cou...

Rethinking phase 2 trials in amyotrophic lateral sclerosis There is a long history of ALS therapies being promoted on the basis of Phase 2 data, which then fail to translate into meaningful benefits in Phase 3 tria

New paper to reflect on the main challenges in phase 2 #ALS #MND trials. Key issues relate too short study durations, reliance on the wrong outcome measures, absence of biomarkers, statistical issues, over-interpretation of 'clinical trends' and miscommunication. academic.oup.com/brain/articl...

Happy birthday!

Poster session B, 5.30-7 7th December

UK researcher wins prestigious Paulo Gontijo Award for MND Research - UKMNDRI Dr. Alfredo Iacoangeli has been awarded the prestigious Paulo Gontijo Award, recognising his vital contributions to MND research. We are delighted to announce that Dr Alfredo Iacoangeli was awarded t...

We are delighted to announce that Dr Alfredo Iacoangeli was awarded the esteemed Paulo Gontijo Award at the opening of the Montreal 32nd International #ALS/#MND Symposium. This global accolade celebrates excellence in MND research.

Read more here: ukmndri.org/2024/12/07/u...

Hey everyone 👋

New platform, same vision… a world free from motor neurone disease 🌍 #MND

We were delighted to welcome Kevin Sinfield and his team to our National Office this morning.

Alongside BBC Breakfast, the team began the penultimate day of the #RunningHomeForChristmas Challenge.

Good luck to the team 💙 donate.giveasyoulive.com/fundraising/kevin-sinfield-and-teams-fundraising

Beautiful sky this morning coming into work

UK MND Research Institute: Updates for late 2024 UK MND Research Institute: Updates for late 2024 As we move towards the end of 2024, having recently marked the 1st anniversary of the formal launch of the UK MND Research Institute, we bring you 4…

Some brief updates from #united2endmnd and our work with the UK MND Research Institute @ukmndri.bsky.social as we move towards the end of 2024.

united2endmnd.org/2024/11/22/u...

#mnd #als

Drug closer to approval as MND Association hails Prescribe Life campaign success Over 15,000 people signed the charity’s petition.

Great news for those living with MND/ALS who carry a variant in the SOD1 gene. www.mndassociation.org/media/latest...