MND Campaigns

Dear @wesstreeting, Tofersen saves lives, yet around 20 people with SOD1 #MND have been told their local NHS can’t give it to them. We need the NHS to give equitable access to #tofersen now. You can make this happen — please act.

There's still time to fill out a new survey exploring how mobility challenges impact health and day‑to‑day care! We’re inviting people with #MND to take part, please share your experiences using the link below 👇 smartsurvey.co.uk/s/MNDAssociati…

We’re inviting the #MND community to a virtual session on the Timms Review - a major Government look at the future of Personal Independence Payment (PIP). Hear what it means for people affected by MND, share your views, and help shape our work in this area. The session will be held on Tues 28 April, 1:30–3pm (Microsoft Teams). If you'd like to join, please email campaigns@mndassociation.org.

Voice banking: What would you like to know? We are planning a new episode of MND Matters with a speech and language therapist, and we want to ask them questions straight from our community Leave your voice banking questions and queries below. ⬇️

Ymhen mis, bydd gennym Senedd newydd sbon, mwy o faint. Helpwch ni i roi MND ar y map drwy ysgrifennu at eich ymgeiswyr lleol yn gofyn iddyn nhw wneud amser i MND os cânt eu hethol: act.mndassociation.org/cy/dwed-wrth-d…

We’ve signed an open letter to the Secretary of State for Work and Pensions urging the Government to undertake a comprehensive review of Carer’s Allowance. You can read the full letter to the Government below 👇 carersuk.org/media/t5opgbz5…

We’re inviting people with #MND to take part in a new survey exploring how mobility challenges impact health and day‑to‑day care. Your experiences are vital - please consider participating by clicking the link below 👇 smartsurvey.co.uk/s/MNDAssociati…

Jessica‑Louise’s story is a powerful reminder of why early diagnosis matters. 🧡 Read it here.🔗 mndassociation.org/our-impact/sto…

Father. Husband. Content creator. Fundraiser. MND advocate. James Smith, who has MND, shares his journey through @diagnosedad. From adapting his home and navigating new symptoms to taking on our 100 Miles in March challenge. Read his story. 🧡

Are you based in the UK and living with SOD-1 MND? There's still time to complete our survey and help contribute to the tofersen NICE appraisal. Email campaigns@mndassociation.org with ‘SOD1 survey’ in the subject line to receive a survey link and share your experiences.

We are pleased to have contributed and supported @mssocietyuk new Thriving not surviving: A right to Neuro Rehab report. You can read more here: mssociety.org.uk/about-us/how-w…

"Everyone deserves to get the support they need when they need it, to live a good life." But access to neurorehabilitation is a postcode lottery. Only 1 in 3 people with neurological conditions have their healthcare needs met. We're calling for change: mssoc.uk/40SkDDm

Earlier this week, the @APPGonMND came together for one of its regular meetings, bringing MPs from across Parliament to discuss key issues affecting the MND community. This session focused on access to Tofersen for people with SOD1-MND, the importance of genetic testing, and the work of the Casey Commission. A huge thank you to all of the MPs who attended. We would also like to congratulate @IanByrneMP for being re-elected as Chair of the APPG. You are helping make every day matter for people affected by MND.

For Patrick, music is his purpose. Our Support Funds help people with or affected by MND keep hold of the things that make them feel like themselves. Your donations make that possible. Help people with MND make the most of every day.

Over the past month, the Public Affairs team have been across Wales promoting our Senedd Campaign Manifesto to current Members of the Senedd and Candidates at conferences. Click through the slideshow below to find out more about the work we've been up to! 👇#mnd

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.

There is 1 more day to go until the APPG on MND🕐 Stay up to date on the day by following @mndcampaigns on Facebook and Twitter. If you haven't already, ask your MP to attend 👇 act.mndassociation.org/2026-03-APPG?u…

There are 3 more days to go! 🕔 Invite your MP to our next APPG meeting. MPs will hear about the barriers to accessing treatments for #MND. Let’s get your MP involved 👇 act.mndassociation.org/2026-03-APPG?u…

Today we attended a live panel discussion at Parliament chaired by Lord Best OBE to launch a new campaign from Habinteg Housing Association’s Insight Group. The campaign focuses on building support for accessible homes and we had a really interesting discussion with great insights on accessible housing, health, and the importance of the M4(2) regulations.

Next week is our @APPGonMND meeting! MPs will hear about barriers acrossing accessing treatments for #MND. If you haven't already, ask your MP to attend 👇 act.mndassociation.org/2026-03-APPG?u…

The @APPGonMND brings together MPs and Peers from across Parliament to improve support for the #MND community. The next APPG meeting is taking place March 17th and will focus on barriers across accessing treatments for MND. You still have time to email your MP and invite them to attend our next APPG on #MND meeting this March. Let’s get your MP involved – email them now: act.mndassociation.org/2026-03-APPG?u…