Please support this UK government petition to reinstate automatic qualification for Covid boosters for #mnd #als and other clinically at risk patients. @ukmndri.bsky.social @mndassoc.bsky.social @mndoddie5.bsky.social petition.parliament.uk/petitions/73...

My first post in a while on my blog on #als #mnd research. This one is on drug repurposing, including the ‘warts’ as well as the hopes. onein300.com/2025/09/24/t...

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.

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...

📢 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...

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

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...

There’s only a few days to go until our webinar focusing on the Discovery Network and Advancing Treatments Award: 🗓️ 15 April ⏰ 12pm Researchers, if you’re thinking of applying, the webinar is a great chance to have questions answered and gain insights. Join here 👇 us06web.zoom.us/webinar/regi...

People with lived experience of MND are being invited to join a study to help better understand how to support people with MND to make decisions about their care,and what support people need For more info or to express interest in involvement, please contact: [email protected]

As Orwell predicted.

Our research team started this week with CORE - an event held with @mndscotland.bsky.social to bring together people living with MND & MND researchers. People living with MND are at the heart of everything we do & we are so grateful to all those who joined us on the day to share their experiences.

More information about CORE, which we have teamed up with @mndscotland.bsky.social to host, is on our website: www.myname5doddie.co.uk/whats-on/art...

Our CORE event on 3 March will bring together researchers & people affected by MND, to build a community passionate about MND research🔬 To make the event more accessible, we are hosting 2 virtual roundtable discussion sessions via Zoom Sign up for the Zoom link here👇 forms.office.com/e/83NTtKjDjX

We believe our job is to help people navigate scenarios like this, always being careful not to give false hope. We'll get back to you if anything changes. Read our previous statement below 👇 www.myname5doddie.co.uk/whats-on/art...

We're aware there is still debate going on, on the merits of ellorarxine. We've made our position on this clear, which is that from the data published so far, it is one of many drugs or compounds in a similar position. We'll be watching developments closely, as we do with all such situations.

It just gets worse. How long will America tolerate?

How does EXPERTS-ALS fit into the MND global drug development process? #als #mnd united2endmnd.org/2025/02/10/e... #united2endmnd

@ukmndri.bsky.social post on ellorarxine. "There is currently no evidence that (it) is safe in humans. However, if… evidence becomes available, we would be delighted to work with the company…to advise on…fastest way to assess it in clinical trials" ukmndri.org/2025/02/07/a...

@ukmndri.bsky.social post on ellorarxine. "There is currently no evidence that (it) is safe in humans. However, if… evidence becomes available, we would be delighted to work with the company…to advise on…fastest way to assess it in clinical trials" #als #mnd ukmndri.org/2025/02/07/a...

Perfectly captured.

🚨 Exciting news! We've just launched the first Supporter Edition of our newsletter!🚀 If you want to stay up to date with the latest #MND research and breakthroughs from the us, make sure to sign up now and never miss an update. ukmndri.org/sign-up-for-...

"I have changed my opinion, yes," he said, "I would even go to Switzerland" But why should he have to? Dying people deserve the choice here at home. #YesToDignity www.bbc.co.uk/news/article...

We educated around 100 policy makers this month when we hosted events at the Scottish & UK Parliaments to raise awareness of MND and My Name’5 Doddie Foundation. Support and engagement were really positive and we’re grateful to all involved 🤝 Read more here 👇 www.myname5doddie.co.uk/whats-on/art...

Early-onset sleep alterations found in patients with amyotrophic lateral sclerosis are ameliorated by orexin antagonist in mouse models | Science Translational Medicine www.science.org/doi/10.1126/...

Nick is LIVING with #MND his positivity is contagious. To date raised over £54,000 for @mndresearch.bsky.social he’s now organised the MND Gala Dinner, 7 April 25. Tickets are now on sale shorturl.at/8SLqt Guest speaker, auctions, entertainment and a whole night of fun!

It was great to attend last week's @mndoddie5.bsky.social parliamentary reception at the @houseofcommons.parliament.uk. Our co-director, @ammaralchalabi.bsky.social, gave a talk on #MND, and it was great to meet APPG on MND chair @ianbyrnemp.bsky.social to discuss how we can accelerate research.

🚨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...

this is how it feels to reach 30 MILLION users!!!

Today the Terminally Ill Adults (End of Life) Bill starts to hear oral evidence from national and international experts in medicine, law, social work and beyond. This is the first time any Private Members Bill has taken evidence in this way, in public. parliamentlive.tv/Event/Index/...

Today I have joined BlueSky i hope to have contact with former followers on X. This photo I took of Ayrton Senna is one of my proudest motor racing memories!!

The end of a wonderful symposium on ALS in San Francisco! Amazing science, and looking forward to the future!

There seems to be some chatter about Ellorarxine as a 'miracle drug' for ALS/MND right now. For perspective, there are many other drugs that currently have the same level or far more published evidence of potential value for ALS/MND. Often. We probably see a few per month like this. So let's see...

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...

Let's not forget, as @akesselheim.bsky.social reminds us, in most cases "[FDA is] making good decisions because it has expert scientists and it has guidelines and rules that it operates under." Those scientists have a tough job that's about to get a lot tougher. www.nytimes.com/2024/12/22/w...

After a year of high profile failed #mnd #als trials, what part did misinformation (deliberate or otherwise), cursory press releases & other information challenges play a part? My 'devil is in the detail' series started 5 years ago. All posts still apply. onein300.com/the-devil-is...

This week we met several Scottish ministers including First Minister, John Swinney, and Cabinet Secretary for Health and Social Care, Neil Gray, to discuss MND and important issues relating to research and treatments for the disease 🔬

Doddie Aid is a personal exercise challenge which raises funds to help us find a cure for MND, and is our most successful campaign to date. Since 2021, 100,000 people have taken part and £5 million has been raised for vital MND research 🔬 doddieaid.com

We spent a busy week in the Scottish Parliament last week talking to MSPs about motor neuron disease (MND), as well as signing them up for Doddie Aid 2025 💪 You can join the Doddie Aid community too by signing up here 👇 app.doddieaid.com

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...

It would be amazing if everyone connected to ALS reposted this. It says many of the things researchers have said behind the scenes for years, in publication form.

Important announcement from Healey #als #mnd platform. Key change - Increased placebo trial length to 9 months in this generic phase 2 platform. Critical recognition of the serious failings/limitations of too short 6 mnth trials. Hopefully moving in the right direction now.

Very important #mnd #als paper/article Long overdue 'putting on paper' failings/challenges of clinical trials & 'perhaps' unpalatable truths. Excellent 30 minute digestible read. Thank you Michael, Martin, Ruben @rpavaneijk.bsky.social and Chris. academic.oup.com/brain/advanc...

Very important #mnd #als paper/article Long overdue 'putting on paper' failings/challenges of clinical trials & 'perhaps' unpalatable truths. Excellent 30 minute digestible read. Thank you Michael, Martin, Ruben @rpavaneijk.bsky.social and Chris. academic.oup.com/brain/advanc...

We're in Montreal, attending the #alsmndsymp - where we'll be learning about the latest updates in #ALS/#MND research from across the world.🌎 Are you attending and fancy a chat? Come and say "Salut!" to us at Booth 15th. See you there!🤝

Exciting news! We've recruited the 1st patient for our #ALS Biomarkers Study. This project aims to better understand why #MND happens, what influences its progression, and how we might slow or stop it. We're thrilled to begin this vital work and discover new insights!🔬

Our researchers at the University of Sheffield have launched a new digital platform to improve access to research for people living with #MND. TiM-R aims to overcome barriers by improving research access and accelerating the search for a cure.✍ Read more below👇 ukmndri.org/2024/12/12/s...

Tris Dyson, @ammaralchalabi.bsky.social and Jeffrey Rostein presenting the Longitude Prize on ALS. The Longitude Prize will give access to large datasets and bring together experts in AI and ALS to identify and validate drug targets and pathways relevant to the disease progression. #alsmndsymp

The end of the 35th International Symposium on #ALS #MND in Montreal. A fantastic few days with the world's leading ALS researchers in the company of patient fellows. Thank you to the @mndassoc.bsky.social @alscanada.bsky.social Brian Dickie and the wonderful MNDA team for putting it all together.

Great meeting, motivating to be a part of it. #als #mnd

Don’t expect RFK Jr & Dr. Oz to get much done on prevention & wellness statnews.com/2024/11/21/d... via @statnews.bsky.social RFK Jr antivaxx rhetoric already taken a (deadly) toll. Vaccine hesitancy is UP for HPV, flu, COVID, measles, etc. Will Oz & RFK Jr make it worse? Yep. But bad already.