David Setters

16.5K posts

David Setters banner
David Setters

David Setters

@dsetters

Got slowly progressing MND. Luckier than most so have to make extra days count. I intend to! Making memories with family. Campaign, raise awareness & funds.

Katılım Mayıs 2011
1.9K Takip Edilen2.2K Takipçiler
David Setters retweetledi
Lee Millard
Lee Millard@onein300·
Much needed global initiative. Thank you @alscanada. Weak drug candidates/repeated failure have marked #als #mnd research for more than a decade. Scientific scrutiny MUST be the priority in our disease. Any #als researcher, esp early career scientists, would benefit from event.
ALS Canada@ALSCanada

We’re thrilled to launch ALS Disrupt, a bold new meeting designed to bring together global leaders in #ALS for open, timely, and collaborative discussions that move the field forward. Unlike traditional meetings, ALS Disrupt creates space for candid, solution‑focused conversations between key opinion leaders. Not behind closed doors, but live, on stage, in front of the research community. Join us at the inaugural ALS Disrupt, from April 25-26, 2026, in Toronto, and help drive meaningful impact. ALS Disrupt is part of ALS Advance, ALS Canada’s National Meetings on ALS, taking place this April. 🔗Registration is open now until March 27: bit.ly/47rrnLM.

English
0
7
7
250
David Setters retweetledi
MND Association
MND Association@mndassoc·
With motor neurone disease, every minute matters. That’s why we’re delighted that the Government has committed to introducing a fast‑track passport for people with MND, helping them access vital support services more quickly. Zoe, who has MND and worked closely with the team behind this important win, has shared her reflections.
English
2
17
54
2K
David Setters retweetledi
MND Education
MND Education@mndeducation·
Genetics plays a role in both familial and sporadic #MND Referrals to genetic counselling could help people access new therapies & identify potential risks for relatives Join our workshop to learn more about the genetic testing pathway & your role in it👉mndassociation.org/education-even…
MND Education tweet mediaMND Education tweet media
English
0
3
9
111
David Setters retweetledi
MNDANorwichWaveney
MNDANorwichWaveney@MNDANorWave·
Excellent news - really pleased to have been part of the team involved with roundtable discussions, and to have had the opportunity to share personal experience of navigating the challenges of accessing care whilst facing the unpredictability and complexity of MND.~SH
MND Association@mndassoc

A new fast‑track passport for people with MND is at the heart of recommended health and social care reforms announced yesterday. We’ve worked with the Commission and our community to shape these proposals through lived experience. Explore the work so far and read more. 🔗

English
0
3
4
157
David Setters retweetledi
Mike Wilson*
Mike Wilson*@Redsmail·
In June, two sports come together to bang the drum against MND in the name of Stephen Darby, Rob Burrow and Marcus Stewart. It’s open to everyone. There’s already loads of ex-pros involved. 6 days, 350 miles, 48 grounds. Join us. Let’s #AttackMND redwoodevents.co.uk/march-of-the-d…
Mike Wilson* tweet mediaMike Wilson* tweet mediaMike Wilson* tweet mediaMike Wilson* tweet media
English
0
7
10
1.7K
David Setters retweetledi
Stockport County
Stockport County@StockportCounty·
🪣 This Saturday, we’re supporting the Darby Rimmer MND Foundation at Edgeley Park. Every donation helps families affected by Motor Neurone Disease and funds vital research 💙 #StockportCounty
English
1
8
23
4.3K
David Setters
David Setters@dsetters·
@UKMNDRI is working with industry partners from UK & overseas to accelerate towards meaningful treatments & ultimately, a cure. COLLABORATION (between @mndresearch centres) + COORDINATION + FUNDING (more needed from @govUK) = PROGRESS @kingsmnd @lifearc1 @MNDoddie5 @mndassoc
UK MND Research Institute@UKMNDRI

Industry partners are vital collaborators in our mission to find crucial new treatments for #MND/#ALS. Which is why our co-director, @AmmarAlChalabi, teamed up with Raya Therapeutics at TRICALS to lead a discussion on Repurposing and Combination Therapies. Read more about our EXPERTS platform👇 ukmndri.org/2025/11/13/rep…

English
0
4
8
176
David Setters retweetledi
Lee Millard
Lee Millard@onein300·
Last week (6th) I wrote to the trustees and CEO of @mndassoc and received a polite response on Friday 13th confirming that they WILL NOT intervene to fund tofersen administration if @GOVUK do not resolve. How do I feel about this position? Lee
Lee Millard@onein300

This has gone on far too long now. Tofersen, proven treatment for SOD1 MND, already approved by @MHRAgovuk is being denied to many #mnd eligible patients across UK. @GOVUK please grant emergency funding to health boards to administer drug. And @mndassoc please.. (1/3)

English
0
5
6
726
David Setters
David Setters@dsetters·
Sourcing bridging funding for #tofersen is a quandary, but imagine your 19-year-old daughter had the gene mutation. Let's work on new ways for @mndassoc, patients @united2endmnd, @MNDPatients, affected families & volunteers to work together. If you agree or not, pls have a read.
Jennie Starkey@StarkeyJennie

A new blog post for those who like to access from here. It’s been a while! Thanks in advance for reading 😊 mndjourney.wordpress.com/2026/02/04/ima…

English
1
7
14
613
David Setters retweetledi
Lee Millard
Lee Millard@onein300·
It’s just under a week since @blandy_r handed compassionate petition & open letter into No.10. Rachel ready to meet @wesstreeting @Keir_Starmer at your convenience. UK patients being denied a significant effective treatment for SOD1 #MND gene cases. @burrow_geoff @ClaireRyanBBC
Lee Millard@onein300

Read Dr Rachel Jakeman’s @blandy_r emotional open letter to @Keir_Starmer & @wesstreeting about the post code lottery access of tofersen for SOD1 #mnd for Lillia. Let’s hope that @GOVUK intervenes ASAP to resolve this emerging scandal. united2endmnd.org/2026/01/29/tof…

English
0
10
10
627
Arthur
Arthur@ArthurButcher44·
Saturday morning and I’m looking through a few of my motorsport photos…. Have a great weekend 👋 Roll on summertime 🌹☀️
Arthur tweet media
English
2
0
3
70
David Setters retweetledi
MND Association
MND Association@mndassoc·
Our new essence isn’t just about how we look today, it’s about where we’re heading. KT, and his wife, Kua-Peng, remind us why urgency is required, progress can’t wait, and why every day matters in the fight against motor neurone disease.
English
1
6
13
1.5K
MND Association
MND Association@mndassoc·
Six people are diagnosed with MND every day. Six people die from MND every day. There is currently no cure… not yet. This is exactly why every day matters. Help us make sure at least one more person learns about MND today.
MND Association tweet media
English
3
17
27
950
lan Byrne MP
lan Byrne MP@IanByrneMP·
Lilia Jakeman is 19. She has a rare form of motor neurone disease. A groundbreaking drug to halt the progression of the disease exists. It’s free to the NHS. Yet her local trust won’t deliver it. Today, I raised Lilia’s case at PMQs, as her family walk from Southampton to Downing Street. Fair access to treatment should not depend on postcode.
English
25
489
2K
55.1K
David Setters
David Setters@dsetters·
If I had 19-year-old daughter or other relative with SOD1, I would expect OUR charity to help temporarily fund “a world (relatively) free from MND” even if for only a few @MNDpatients. @mndassoc already funds 20+ excellent CARE Centres which support drug trials. 2/3 @Redsmail
English
0
4
10
279

Keşfet

@MNDPatients @ALSCanada @blandy_r @Keir_Starmer @wesstreeting @mndassoc @united2endmnd @UK_mnd_CSG