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.
Joined May 2011
- Tweets16.5K
- Following1.9K
- Followers2.2K
- Likes31.5K
Pinned Tweet
Pls sign this important petition seeking change in an NHS Continuing Healthcare process which is not fit for purpose for @MNDPatients & others with life limiting conditions action.dementiauk.org/fix-nh… @MNDsouthlondon @MNDWestMids @MNDwestsussex @MNDAEastKent @MND_RWB @westsurreymnda
Please sign! We want to improve access to NHS Continuing Healthcare funding #CHC & ultimately standards of care provided to support @MNDPatients & others with life limiting conditions. Great to see charities working together! action.dementiauk.org/fix-nh… @DementiaUK @mndcampaigns
I've #justsponsored Lucinda Lighting, who's fundraising for My Name'5 Doddie Foundation on @JustGiving. Donate now justgiving.com/page/benlight…
David Setters retweeted
🧪🔬📊
🌎12 ottobre 2026: EXPERTS-ALS @UKMNDRI: Ropinirolo - Risultati dell'analisi intermedia
🔗🇮🇹tinyurl.com/43yx8r32
Il reclutamento continua per i bracci doxiciclina e salbutamolo dello studio.
Grazie a tutti i partecipanti e ricercatori dello studio.❤️
David Setters retweeted
Some thoughts on the latest EXPERTS-ALS results and recent important advances in treatment developments.
united2endmnd.org/2026/10/14…
David Setters retweeted
Pls sign this important petition seeking change in an NHS Continuing Healthcare process which is not fit for purpose for @MNDPatients & others with life limiting conditions action.dementiauk.org/fix-nh… @MNDsouthlondon @MNDWestMids @MNDwestsussex @MNDAEastKent @MND_RWB @westsurreymnda
Please sign! We want to improve access to NHS Continuing Healthcare funding #CHC & ultimately standards of care provided to support @MNDPatients & others with life limiting conditions. Great to see charities working together! action.dementiauk.org/fix-nh… @DementiaUK @mndcampaigns
David Setters retweeted
March 25-27 2027 - The MND Sports Tour of London in support of the @DarbyRimmerMND and the Mel Evans MBE Foundation.
Three sports at all levels fighting MND together.
Registration is now open at redwoodevents.co.uk/mndlondo…
Come and be a walker or sponsor a stage.
#AttackMND
David Setters retweeted
Please join us & @westsurreymnda on Sunday, September 27 in the beautiful surroundings of @denbiesvineyard @ 10 AM for a very informal walk in the Surrey Hills. Choose a very short stroll or a long hike, completely up to you! Raising funds for research & care. @HelloDorking
David Setters retweeted
Coming soon in support of @DarbyRimmerMND & the Mel Evans MBE Foundation (@LynnPritchatt)
Already talking to our friends at @wellingunited @HornchurchFC & @WinFinchleyFC about being part of it. Love to talk to more of these clubs to join us in our efforts to #AttackMND
David Setters retweeted
Join us for the 7th UCL Queen Square MND Centre ALS/MND International Symposium, in partnership with the UK MND RI.
📅 11 September 2026 | London & Zoom
🎟️ Free to register
Speakers from Columbia, Oxford, Max Planck and more.
Register below!
eventbrite.co.uk/e/ucl-queen…
David Setters retweeted
Today was a big day for our community! Jessica and Sue, who are MND carers, were in the audience as Andy Burnham announced his plans for social care reform - and got to meet him in person.
His announcement and the launch of a national conversation with the public is much needed.
ALT Jessica with Prime Minister Andy Burnham
ALT Jessica and Sue, MND carers, with Angela Rayner, Secretary of State for Housing, Communities and Local Government
That's fabulous. A brilliant volunteer. Well done, Sue.
David Setters retweeted
Following on from my optimistic review of the last decade of MND/ALS Research.
Here is the flip side. I use the dramatic term Dark Side. These are things which need to improve, and despite the critical nature I remain an optimist. #mnd #als
onein300.com/2026/06/28/the-…
David Setters retweeted
Calling all @Swinton_Lions fans. Here’s a chance to bid for a signed shirt and support the MND community through @DarbyRimmerMND and @LDShospcharity
Bid at uk.emma-live.com/MOTDAuction…
Shirt donated by the club as part of the recent Match of the Day III event.
Marvellous job, Ben! Greater government funding is needed for the collaborative/coordinated @UKMNDRI research programme to accelerate progress towards meaningful treatments & a cure. Let's be @united2endmnd with the amazing @LewisMoody7 & @MNDoddie5 @mndassoc @lifearc1
David Setters retweeted
Too many carers are being let down
by an NHS continuing healthcare
(CHC) process that is failing to fund
the right care for people with complex
health needs.
Join us in urging the UK government
to fix NHS CHC this #CarersWeek.
Sign our petition now: action.dementiauk.org/fix-nh…
Huge thanks to @APPGonMND chair, @IanByrneMP for coming along to his beloved Anfield @LFC for the start of @DarbyRimmerMND #MOTD3 on Monday. Thanks for all you do to help @MNDPatients @united2endmnd in @UKParliament. @mndcampaigns @Reigatians @Redsmail
David Setters retweeted
One more day till March of the Day III starts at @LFC. 950 take part at in our 350 mile walk around 50 football & rugby grounds over 6 days in support of @DarbyRimmerMND & @LDShospcharity. £71k pledged already.
Please donate if you can.
donate.giveasyoulive.com/fun…
#AttackMND
united2endmnd.org/2026/05/29…
Unless this is tackled now, when the next treatment is taken to UK regulators, it will take 3+ years before it is widely available. Given average survival post diagnosis is 3 years that says it all. @MHRAgovuk @NICEComms @APPGonMND @IanByrneMP 2/2 #MND