MND Campaigns

Every day we campaign for the change that people with motor neurone disease urgently need. Because with MND, every day matters. @mndassoc

[MND Campaigns @mndcampaigns]

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.

[MND Association @mndassoc]

We are heartened to see the Government will appoint a new champion for unpaid carers, as announced by the Health and Social Care Secretary @YvetteCooperMP today.

Unpaid carers of people, fittingly called a "hidden army" by Ms Cooper today, provide vital support and help loved ones maintain a better quality of life while reducing pressure on health and social care services.

Alongside the Prime Minister’s recent commitment to a National Care Service, we are pleased to see the ambition and willingness shown in reforming adult social care.

The MND Association will continue to feed into this review, through our work with the Casey Commission, and ensure people with MND are at the heart of the conversation.

📸Secretary of State Yvette Cooper alongside our Director of Engagement, Richard Evans, at the 2026 Labour Party Conference.

[MND Campaigns @mndcampaigns]

Look who dropped by our stand at Labour conference! 👋 Thank you to @IanByrneMP, chair of our All-Party Parliamentary Group on MND, for your ongoing support for people with MND.

[MND Campaigns @mndcampaigns]

As Sir Kevin Sinfield continues his 7 in 7 challenge across the north of England, our Campaigning, Policy and Public Affairs team are representing the Association and our MND community in Liverpool at the Labour Party Conference.

James Evans, our Senior Public Affairs Adviser, highlights some of the topics we have been talking to MPs and councillors about 👇

[MND Campaigns @mndcampaigns]

@GRobinsonDUP @paulgivan @little_pengelly @JimShannonMP @Buchanan_dup Every conversation helps build support for people living with MND and their families.

[MND Campaigns @mndcampaigns]

Thank you to everyone who stopped to talk to us about MND at the DUP conference in Northern Ireland this week, including @grobinsondup, @paulgivan, @little_pengelly, @jimshannonmp,@Buchanan_dup, Tom Buchanan and Cllr Paula Bradley.

[MND Campaigns @mndcampaigns]

Political party conference season is in full swing and our Campaigning, Policy and Public Affairs team will be attending them around the UK.

James Evans, our Senior Public Affairs Adviser, gives you the rundown from a sunny Brighton at the Liberal Democrat event where we all talking all things #MND👇

[MND Campaigns @mndcampaigns]

People with MND in Wales are waiting months for the vital adaptations that let them stay safe at home.

Our event at the Senedd on 30 Sept will put this crisis in front of MSs directly - but we need your help to get them there. Email your MSs now 👇

https://t.co/em4S9Os1OS

[MND Campaigns @mndcampaigns]

Next up on our conference tour: we're heading to Brighton this weekend for the Liberal Democrat Autumn Conference 🌊 Find us there and come and say hello.

[MND Campaigns @mndcampaigns]

PIP in its current form is failing people with MND, with the Timms Review previously calling it 'dehumanising' and 'degrading' towards disabled people applying for it.

It's why the MND Association welcomes the recommendations to overhaul the process, led by Sir Stephen Timms MP, that were published last Friday (September 11).

People with MND have fed into the review through our consultation response, alongside the collaborative work we have done with Marie Curie and other charities.

Of the new measures, reducing unnecessary reviews of PIP for people with lifelong or degenerative conditions in particular is much needed and long overdue.

Flora Butler, Senior Policy Adviser, said: "It is great to see these solutions proposed to problems that have cast a shadow over the PIP system for years.

"It is an anxiety-inducing, stressful, and distressing process for people with MND – often carried out without the expertise or compassion required to help someone with such a complex and life changing disease.

"We welcome the proposals put forward by the Timms Review and look forward to seeing them implemented as quickly as possible."

https://t.co/3J6NlpDHaJ

[MND Campaigns @mndcampaigns]

For many people with MND, home isn't just where they live - it's where they get vital care.

But people with MND in Wales are stuck in inaccessible homes for months waiting for vital adaptations like ramps or wet rooms.

Ask your MSs to help end the MND housing crisis:
https://t.co/vXhHM03aqd

[MND Campaigns @mndcampaigns]

Thanks to everyone who spoke with us at Reform UK conference in Birmingham this weekend 🙌 Great to talk about what needs to change for the MND community.

Next stop: Brighton for the Lib Dems!

[MND Campaigns @mndcampaigns]

Conference season is here! This autumn you'll find our team at as many party conferences as we can this year - Labour, Conservative, Lib Dem, and Reform UK -  making sure MND stays on the agenda. If you're there, come and say hello👋

[MND Campaigns @mndcampaigns]

We're in Birmingham this weekend for the Reform UK Party Conference 📍 Come and find us to hear more about our campaigns for people living with MND.

[MND Campaigns @mndcampaigns]

MPs get invited to meetings all the time. But hearing directly from someone in their own area - someone affected by MND - is what really makes them stop and listen.

Ask your MP to meet us at party conference this autumn using our easy online tool ➡️
https://t.co/4H3zzODjoZ

[MND Campaigns @mndcampaigns]

Autumn means party conference season – when politicians from each party meet up to discuss their plans for the year ahead. It's one of the best chances all year to get MND noticed by MPs. We'll be at the Labour & Conservative conferences, and meeting MPs from other parties too.

Will you ask your MP to meet us? https://t.co/RPU86f2AiN

[MND Campaigns @mndcampaigns]

The CHC process is broken, and many people with MND are not able to access the care they need.

It doesn’t have to be this way.

Join the call for change: https://t.co/LH7QmLgYih

[MND Association @mndassoc]

Last year the Government launched a review to ensure that the Personal Independence Payment (PIP) process is fair and fit for purpose.

The team behind the review want to hear your thoughts on the recommendations they have developed so far. They are hosting a series of workshops with disabled people and people with long-term health conditions.

To register your interest and find out more, click here. 🔗https://t.co/u4OuV1tgfW

[MND Association @mndassoc]

Have your say on support for unpaid carers. 📢

The Government is seeking views on employment rights for unpaid carers and how these can be improved. We're gathering feedback from people living with and affected by MND to help inform our response.

Complete the survey here. 🔗 https://t.co/IpSOTOkRS4

[MND Campaigns @mndcampaigns]

We're delighted by this announcement and the commitment to working with the MND community to get it right.

Now we're looking forward to seeing this in action, with real change at national and local level. We'll keep you updated as this progresses.

[MND Campaigns @mndcampaigns]

ICYMI: This week, Health Secretary Yvette Cooper announced something that could be completely transformative for the MND community.

The government is working on a fast-track pathway so people with MND can quickly get the care and support they need.

https://t.co/ynn7p0KVcg