Lee Millard

Survival data press release simply breathtaking. Can anyone take company seriously? FDA & any informed scientifically advised investor(s) would not be impressed at all. It’s full of holes & is totally meaningless.

The reality? Ph3b needs to complete which will be, if ever starts, in 2029 earliest.

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.

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)

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...

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.

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

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...

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: sean.white3@nhs.net

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.

Join us at CORE: An event connecting researchers and those affected by MND

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

Update on ellorarxine

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?

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…

How does EXPERTS-ALS fit into the MND global drug development process?

#als #mnd

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

#united2endmnd

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.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.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-...

When you actually develop something that might lead to a horrendous death it changes even the most hardened opponents.

We just want choice.

'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.

"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 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.

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.

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...

euphoric photo of dolphins jumping under a rainbow

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

Parliamentlive.tv Terminally Ill Adults (End of Life) Bill

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!!