For obvious reasons, we are, very sadly, part of an ever-changing community. See our post to find out more about our aims, who we work with, what we've done together & what we're doing to help accelerate progress in MND Research UK MND Research Institute #United2EndMND united2endmnd.org/2025/03/31/mis…

I’ve just signed a petition to ask the Government to make sure people with the SOD1 type of #MND can access #tofersen, a life-saving treatment. Can you sign too? act.mndassociation.org/2025-prescribe…

Please sign petition asking GOV.UK Department of Health and Social Care DHSC Media Centre Karin Smyth to make sure people with the SOD1 type of #MND can access #tofersen, a life-saving treatment. Details here mndassociation.org/get-involved/c… lan Byrne MP Helen Maguire BEM MP 🔶 Claire Coutinho MotorNeuroneDisease Aphra Brandreth

united2endmnd.org/2025/05/10/uni… Our initial take on Mirocals results, including our asks of neurologists, charities, NHS authorities & Department of Health and Social Care DHSC Media Centre Hoping for more news next week from UK MND Clinical Studies Group - Geoff Burrow Ed Slater Darby Rimmer MND Foundation Jon Coates Charlotte Hawkins

Probably the most significant paper on #MND published for many years. Not a cure, but potential to give MotorNeuroneDisease more time with their loved ones. To understand the trial, take a look at this very informative blog from MND Research in plain English! mndassociation.org/media/latest-n…

This week, we launched our brand new and redesigned website for the MND Register.🗺️ But why is it so important? Find out how this vital resource is helping researchers understand who is affected by #MND/#ALS and why. 📖Read more below. ukmndri.org/2025/05/28/mnd…

We're thrilled about our new MND Register Website, but do you have questions on how it works and why it is so important?📃 Our friends at the MND Association sat down with Andrea Biondi, who is Project Manager of the MND Register to answer these questions. Watch below👇

Mech Eng 🌱 UK MND Research Institute MND Association MotorNeuroneDisease want to see MND Register data used to focus on UK areas where services are lacking & need improvement. Hoping to work with MND Campaigns MND Association on this 1/2 APPG on Motor Neurone Disease lan Byrne MP Aphra Brandreth Alex Ward MND Angel 💙🧡

Mech Eng 🌱 UK MND Research Institute MND Association MotorNeuroneDisease MND Register MND Campaigns APPG on Motor Neurone Disease lan Byrne MP Aphra Brandreth Alex Ward MND Angel 💙🧡 When data is integrated with Dementias Platform UK Health Data Research UK (HDR UK) UK MND Research Institute initiatives funded by Patients United2EndMND campaign with MND Association MND Scotland My Name'5 Doddie Foundation @lifearc, MND Research scientists will have powerful weapon to speed up progress to new treatments & a cure 2/2 hdruk.ac.uk/news/accelerat…

Your chance to have your say on how MND Association uses donors' funds to advance MND Research Please give it a go and ensure your voice is heard.smartsurvey.co.uk/s/BNVEY3/ Please share.

Right now, some people can access #tofersen, a life-saving treatment — but for people with SOD1 #MND like Ellis and Seckin, the wait for tofersen continues. Action is needed now. Add your name now to join our #PrescribeLife campaign: act.mndassociation.org/join-our-campa…

Very good to see MND Association rolling out its MND Research nurse programme. MotorNeuroneDisease UK MND Research Institute King's MND Centre Neuroscience Institute Oxford MND Research Judith Newton mndassociation.org/media/latest-n…

Interim measures are needed Karin Smyth. The drug is being supplied free by Biogen to some appropriate MotorNeuroneDisease Remaining c20 desperately need this to extend their lives with their loved ones. Please allocate necessary resources ASAP Geoff Burrow Ed Slater Darby Rimmer MND Foundation

The "clinically extremely vulnerable" with #MND & other serious conditions no longer qualify automatically for Covid booster. Totally illogical when we do qualify for flu vaccine! Pls sign petition petition.parliament.uk/petitions/7331… Clinically Vulnerable Families 💙💜💗 lan Byrne MP Aphra Brandreth Chris Coghlan MP 🔶 1/2

Pls sign/share petition @challengingMND Ed Slater Darby Rimmer MND Foundation Mike Wilson* JJ Anisiøbi Ian Pratt MNDF MNDANorwichWaveney MNDa CheshireBranch MND Association - South Lancs Branch Sussex MND Network King's MND Centre Oxford MND Research MND Association - Manchester & District Branch North west Wales MND MotorNeuroneDisease MND East London MND South and East Somerset Branch Zoe Ball bbc.co.uk/news/articles/… 2/2

The REASON so few (circa 5,000) are living with motor neuron disease #MND, is because so many are DYING; the MAJORITY due to RESPIRATORY FAILURE! HOW does it make sense NOT to provide a COVID BOOSTER for our most CLINICALLY VULNERABLE?! PLEASE 🙏 SIGN THE PETITION...

Thank you Dr Caroline Johnson MP MP for for submitting a parliamentary question on steps to make #tofersen available to all who need it. Read the full response from Dr Zubir Ahmed MP here: questions-statements.parliament.uk/written-questi…

BBC Breakfast Claire Ryan Richard Frediani Thanks for coverage of flu vaccine today. Vital for "cynically extremely vulnerable". But why no automatic access to #Covid vaccine this year for @MNDpatients & others? facebook.com/watch/?v=13716… bbc.co.uk/news/articles/… Chris Coghlan MP 🔶

Marvellous to hear Sir Kev mention Cath Muir EyeGaze Artist & Ian Flatt this morning, and emphasising the nationwide influence of his/his team's efforts on improving care & funding for MND Research for MotorNeuroneDisease Patients United2EndMND Thanks to Sally Nugent Jon Kay ☕️ Claire Ryan.

We've hit 100 sign-ups to our Remote Research Platform! Thank you to everyone who has signed up; together, we’re building a more inclusive #MND/#ALS research community. 🔗If you haven't joined, sign up below! ukmndri.org/research/under…