Lee Millard
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onein300.bsky.social
Lee Millard
@onein300.bsky.social
210 followers 300 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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onein300.bsky.social
Lee Millard @onein300.bsky.social · Oct 28
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...
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 …
onein300.com
onein300.bsky.social
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: 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...
petition.parliament.uk
October 9, 2025 at 12:54 PM
onein300.bsky.social
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...
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…
onein300.com
September 24, 2025 at 10:09 PM
Reposted by Lee Millard
ukmndri.bsky.social
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.
March 25, 2025 at 4:39 PM
Reposted by Lee Millard
ukmndri.bsky.social
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
March 26, 2025 at 2:55 PM
Reposted by Lee Millard
mndoddie5.bsky.social
📢 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...
April 7, 2025 at 9:34 AM
Reposted by Lee Millard
ukmndri.bsky.social
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
April 17, 2025 at 2:42 PM
Reposted by Lee Millard
ukmndri.bsky.social
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
April 14, 2025 at 10:46 AM
Reposted by Lee Millard
mndoddie5.bsky.social
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...
April 11, 2025 at 9:08 AM
Reposted by Lee Millard
mndoddie5.bsky.social
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
March 21, 2025 at 10:00 AM
Reposted by Lee Millard
georgetakei.bsky.social
As Orwell predicted.
March 9, 2025 at 8:58 PM
Reposted by Lee Millard
mndoddie5.bsky.social
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.
March 7, 2025 at 1:05 PM
Reposted by Lee Millard
mndoddie5.bsky.social
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...
Join us at CORE: An event connecting researchers and those affected by MND
www.myname5doddie.co.uk
February 11, 2025 at 3:39 PM
Reposted by Lee Millard
mndoddie5.bsky.social
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
February 11, 2025 at 3:34 PM
Reposted by Lee Millard
mndoddie5.bsky.social
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...
Update on ellorarxine
www.myname5doddie.co.uk
February 18, 2025 at 4:12 PM
Reposted by Lee Millard
mndoddie5.bsky.social
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.
February 18, 2025 at 4:12 PM
onein300.bsky.social
It just gets worse. How long will America tolerate?
drandrealove.bsky.social Andrea Love, PhD | Biomedical Scientist @drandrealove.bsky.social · Feb 12
The NIH funding cap on indirect costs will eviscerate scientific research from the inside.

Universities won’t be able to support researchers, biomedical progress will slow, & YOUR health will be harmed.

Plus, widespread economic collapse.

Read more ⬇️
news.immunologic.org/p/the-nih-in...
The NIH indirect cost caps will kneecap biomedical research–and everyone will pay the price
This reckless policy will gut scientific innovation, drive researchers out of the US, devastate healthcare, and cause economic collapse.
news.immunologic.org
February 12, 2025 at 3:12 PM
onein300.bsky.social
How does EXPERTS-ALS fit into the MND global drug development process?

#als #mnd

united2endmnd.org/2025/02/10/e...

#united2endmnd
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…
united2endmnd.org
February 10, 2025 at 7:30 PM
Reposted by Lee Millard
united2endmnd.bsky.social
@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...
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...
ukmndri.org
February 8, 2025 at 10:29 AM
onein300.bsky.social
@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...
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...
ukmndri.org
February 8, 2025 at 10:25 AM
Reposted by Lee Millard
georgetakei.bsky.social
Perfectly captured.
February 3, 2025 at 2:48 AM
Reposted by Lee Millard
ukmndri.bsky.social
🚨 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-...
January 30, 2025 at 10:53 AM
Reposted by Lee Millard
dignityindying.org.uk
"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...
'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.
www.bbc.co.uk
February 1, 2025 at 11:08 AM
Reposted by Lee Millard
mndoddie5.bsky.social
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...
January 31, 2025 at 10:02 AM
Reposted by Lee Millard
mndaus-research.bsky.social
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/...
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.
www.science.org
January 30, 2025 at 10:38 PM
Reposted by Lee Millard
martinbooth.bsky.social
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!
January 29, 2025 at 6:36 PM