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Lee Millard

@onein300.bsky.social
218 followers 304 following 41 posts

1/300 is the lifetime risk of developing #ALS #MND. My living with Motor Neurone Disease blog. onein300.com

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Lee Millard @onein300.bsky.social · 09/10/2025
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...
petition.parliament.uk
Petition: Fund NHS COVID boosters for Clinically Vulnerable people – keep covid boosters
'Protect the NHS' and 'Save Lives' by continuing to fund NHS COVID boosters for Clinically Vulnerable people, including most previously shielded as CEV, rather than limiting them to over-75s, care hom...
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Lee Millard @onein300.bsky.social · 24/09/2025
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...
onein300.com
Today’s novel drug is tomorrow’s repurposed drug?
I hope the slightly provocative little title caught your eye. This is my latest post in my The Devil is the Detail series. I try to sketch out the landscape of drug repurposing in our disease. My a…
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UK MND Research Institute @ukmndri.bsky.social · 25/03/2025
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 · 26/03/2025
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...
myname5doddie.co.uk
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)
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My Name'5 Doddie Foundation @mndoddie5.bsky.social · 07/04/2025
📢 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 · 17/04/2025
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
ukmndri.org
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.
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UK MND Research Institute @ukmndri.bsky.social · 14/04/2025
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...
ukmndri.org
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.
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My Name'5 Doddie Foundation @mndoddie5.bsky.social · 11/04/2025
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...
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My Name'5 Doddie Foundation @mndoddie5.bsky.social · 21/03/2025
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: sean.white3@nhs.net
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George Takei @georgetakei.bsky.social · 09/03/2025
As Orwell predicted.
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My Name'5 Doddie Foundation @mndoddie5.bsky.social · 07/03/2025
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.
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My Name'5 Doddie Foundation @mndoddie5.bsky.social · 11/02/2025
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...
myname5doddie.co.uk
Join us at CORE: An event connecting researchers and those affected by MND
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My Name'5 Doddie Foundation @mndoddie5.bsky.social · 11/02/2025
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
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My Name'5 Doddie Foundation @mndoddie5.bsky.social · 18/02/2025
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...
myname5doddie.co.uk
Update on ellorarxine
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My Name'5 Doddie Foundation @mndoddie5.bsky.social · 18/02/2025
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.
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Lee Millard @onein300.bsky.social · 12/02/2025
It just gets worse. How long will America tolerate?
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Lee Millard @onein300.bsky.social · 10/02/2025
How does EXPERTS-ALS fit into the MND global drug development process? #als #mnd united2endmnd.org/2025/02/10/e... #united2endmnd
united2endmnd.org
EXPERTS-ALS Accelerating MND Drug Development
EXPERTS-ALS Accelerating MND Drug Development You may have seen the recent news from the UK MND Research Institute announcing that one of its first projects, EXPERTS-ALS, funded by the NIHR from th…
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United2EndMND @united2endmnd.bsky.social · 08/02/2025
@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.org
An update on Ellorarxine - UKMNDRI
Why this statement? 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...
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Lee Millard @onein300.bsky.social · 08/02/2025
@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...
ukmndri.org
An update on Ellorarxine - UKMNDRI
Why this statement? 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...
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George Takei @georgetakei.bsky.social · 03/02/2025
Perfectly captured.
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UK MND Research Institute @ukmndri.bsky.social · 30/01/2025
🚨 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-...
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Dignity in Dying @dignityindying.org.uk · 01/02/2025
"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...
bbc.co.uk
'Having a terminal illness has changed my mind on assisted dying'
Patients and palliative care experts have debated what the assisted dying bill could mean for them.
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My Name'5 Doddie Foundation @mndoddie5.bsky.social · 31/01/2025
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...
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MND Australia Research @mndaus-research.bsky.social · 30/01/2025
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/...
science.org
Early-onset sleep alterations found in patients with amyotrophic lateral sclerosis are ameliorated by orexin antagonist in mouse models
In amyotrophic lateral sclerosis, sleep defects occur in patients, risk gene carriers, and mouse models in which they are rescued preclinically by an orexin antagonist.
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Martin Booth @martinbooth.bsky.social · 29/01/2025
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!
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UK MND Research Institute @ukmndri.bsky.social · 20/01/2025
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.
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UK MND Research Institute @ukmndri.bsky.social · 29/01/2025
🚨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...
ukmndri.org
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...
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Bluesky @bsky.app · 29/01/2025
this is how it feels to reach 30 MILLION users!!!
euphoric photo of dolphins jumping under a rainbow
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Dignity in Dying @dignityindying.org.uk · 28/01/2025
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/...
parliamentlive.tv
Parliamentlive.tv
Terminally Ill Adults (End of Life) Bill
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Arthur @arthurbutcher44.bsky.social · 24/01/2025
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!!
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Joao Pereira @jdpereira.bsky.social · 18/01/2025
The end of a wonderful symposium on ALS in San Francisco! Amazing science, and looking forward to the future!
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David Taylor @vpresearchals.bsky.social · 08/01/2025
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...
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UK MND Research Institute @ukmndri.bsky.social · 07/12/2024
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...
ukmndri.org
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...
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Holly Fernandez Lynch @hollylynchez.bsky.social · 22/12/2024
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...
nytimes.com
R.F.K. Jr. Wants to Overhaul the F.D.A. How Would Scientists Change It? (Gift Article)
While some agree with Robert F. Kennedy Jr. that the agency needs reform, their ideas for fixing it are very different from his.
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Lee Millard @onein300.bsky.social · 28/10/2024
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...
onein300.com
The Devil is in the Detail
This page unites my special research posts on the subject of that “Devil detail”. You all know the sort of thing? Your immediate reaction to a subject, or proposition, is perhaps is not always the …
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My Name'5 Doddie Foundation @mndoddie5.bsky.social · 10/01/2025
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 🔬
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My Name'5 Doddie Foundation @mndoddie5.bsky.social · 13/01/2025
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
doddieaid.com
Doddie Aid 2025
Supporting Doddie Weir in his quest to further research into more effective MND treatments
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My Name'5 Doddie Foundation @mndoddie5.bsky.social · 13/01/2025
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
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Ruben van Eijk @rpavaneijk.bsky.social · 10/12/2024
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...
academic.oup.com
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
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David Taylor @vpresearchals.bsky.social · 11/12/2024
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.
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Lee Millard @onein300.bsky.social · 20/12/2024
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.
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Lee Millard @onein300.bsky.social · 12/12/2024
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...
academic.oup.com
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
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Lee Millard @onein300.bsky.social · 12/12/2024
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...
academic.oup.com
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
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UK MND Research Institute @ukmndri.bsky.social · 05/12/2024
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!🤝
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UK MND Research Institute @ukmndri.bsky.social · 11/12/2024
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!🔬
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UK MND Research Institute @ukmndri.bsky.social · 12/12/2024
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...
ukmndri.org
Scientists launch new digital platform to revolutionise research participation - UKMNDRI
Our researchers have launched a new digital platform to improve access to research for people living with MND and accelerate the search for a cure. Our researchers, based at the University of Sheffie...
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Amalia Papanikolaou @amalia-papa.bsky.social · 06/12/2024
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
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Ammar Al-Chalabi @ammaralchalabi.bsky.social · 08/12/2024
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.
@ammar.alchalabi and Kuldip Dave on a stage at the Congress Centre in Montreal
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Sean ⚽️🏉🏏⛵️ @sean-uk.bsky.social · 09/12/2024
Great meeting, motivating to be a part of it. #als #mnd
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Timothy Caulfield @caulfieldtim.bsky.social · 24/11/2024
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.
statnews.com
Don’t expect RFK Jr. and Dr. Oz to get much done on prevention and wellness
Opinion: The U.S. has a major problem with chronic illness. But RFK Jr. and Dr. Oz won’t be able to make much of a difference.
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