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.

[Carers UK @CarersUK]

The consultation covers England, Scotland and Wales. We’re calling on carers and employers to respond to the consultation and help shape future workplace rights for carers: https://t.co/gx2Vs2bJxr

[Carers UK @CarersUK]

Last night, Carers UK and @TSB brought together employers, policymakers and carers ahead of today's launch of the Government's consultation on employment rights for unpaid carers.

[Jon Burrows MLA @JonBurrowsMLA]

I was honoured to meet Colin at a motor neurone disease association event today. Colin said he hadn’t much to grumble about & wanted to ensure I support carers. My aunty died of this cruel disease. Many of us complain about small things; Colin inspired me with his courage & grace

[MND Campaigns @mndcampaigns]

A great day at Parliament Buildings, Stormont celebrating Global MND Awareness day. Great engagement and discussion with people living with #MND and their loved ones with elected representatives. Many thanks to all who came and made such a special day happen.

Thanks so much to @JohnBlairAPNI, @buchanan_dup, @mlabuchanan, @JonBurrowsMLA, @DianeDoddsMLA, @DannyDonnelly1, @StephenDunneMLA, @MarkHDurkan, @ciaraf44, @TGastonMLA, @MaoliosaMcH, @mcguigan_philip, @JustinMcNulty, @mikenesbittni, @ClaireSugden for coming to listen to the lived experience of people with MND and for all your support.

[MND Campaigns @mndcampaigns]

On Monday, our CEO Tanya Curry attended a 'policy scrum' with the Department of Health and Social Care (DHSC) to discuss fast-track care and support for people living with MND. Here is a message she sent ahead of the meeting.

[MND Campaigns @mndcampaigns]

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: https://t.co/ZTZhVC7tRB

[MND Association @mndassoc]

Today, we supplied evidence to support the approval of tofersen as a treatment for people with SOD1 MND.

The window for submissions to the National Institute for Health and Care Excellence (NICE) closes on Thursday (4 June), with assessors now deciding whether the drug should be made available on the NHS.

Quotes from interviews, survey results and the nomination of 'patient experts' with a lived experience of MND were included in our submission of evidence. Read more here: https://t.co/05yX6jRonW

[MND Campaigns @mndcampaigns]

We want to know how we can improve the way we report on research news and cover the content people want to hear about from this year’s Symposium, happening in Amsterdam from 9-11 December.

If you are able, please take a few minutes to complete the below survey and to help us deliver the right news in the best way👇

https://t.co/qrNLcD45iq

[MND Association | Northern Ireland @mndassocNI]

Join us to share with MLAs your experiences of living with MND, raise concerns, and discuss how services and support can be improved.

Help build awareness of the realities of MND and be part of shaping change.

Tuesday 9th June, 1pm-4pm
Room 115, Stormont Parliament Buildings

[MND Campaigns @mndcampaigns]

Join our online workshop on the UK Rare Diseases Framework in collaboration with Genetics Alliance UK.

If you are living with or affected by MND, we’d love to hear about any gaps or needs that are not currently covered by the framework.

Genetics Alliance UK will then share all the findings to government teams working on future policy for rare conditions.

Thu 11/06/2026 - 14:30 - 15:50pm via MS Teams. If you'd like to attend, please email [email protected]

[MND Campaigns @mndcampaigns]

NHS continuing healthcare (CHC) can be a lifeline for people with MND. But too many families face a process that’s confusing, inconsistent, and unfair.

We’ve joined 11 other charities calling on the Health Secretary to fix NHS CHC once and for all.

Sign the petition: https://t.co/ZTZhVC7tRB

[MND Association @mndassoc]

It’s Volunteers' Week — a chance to celebrate the incredible people who raise awareness, campaign, and support everyone affected by MND. Here’s a look at our volunteers in numbers.

#VolunteersWeek

[MND Campaigns @mndcampaigns]

Join our online workshop on the UK Rare Diseases Framework in collaboration with Genetics Alliance UK.

First published in 2021, the framework outlined a national vision for improving the lives of those living with rare diseases.

If you are living with or affected by MND, we’d love to hear about any gaps or needs that are not currently covered by the framework.

Genetics Alliance UK will then share all the findings to government teams working on future policy for rare conditions.

Thu 11/06/2026 - 14:30 - 15:50pm via MS Teams. If you'd like to attend, please email [email protected]”

[MND Campaigns @mndcampaigns]

We are proud to stand alongside more than 30 organisations calling for an end to benefit reassessments for people with terminal or life-limiting illnesses - and for fast-tracked, lifetime awards of the higher rate of PIP Daily Living and Mobility components.

For thousands of families, these changes would mean genuine security at the most difficult time of their lives.

People living with MND face enough. They should not have to spend their remaining time navigating bureaucratic hurdles or living with financial uncertainty. They deserve to focus on what matters most: their care, their comfort, and the people they love.

Read more👇

https://t.co/q99xnbVEeu

[MND Association @mndassoc]

Disabled Facilities Grants help fund essential home adaptations for people with MND, but the means test hasn’t been updated in over a decade. Families like Martin’s have had to drain their savings just to meet basic needs. This is unacceptable.

Help unlock the door for people with MND — write to your councillor today.

🔗https://t.co/fpDed6gcGd

[MND Association @mndassoc]

Unlock the door for people with Motor Neurone Disease. Write to your councillor.

🔗https://t.co/j15DEAAzhs

[MND Campaigns @mndcampaigns]

We’re so pleased to see Councillor Jonathan Hulley @Jon4Twickenham pass a motion at Runnymede Borough Council calling for faster target times for home adaptations for people living with progressive and terminal conditions, including #MND.

Jonathan worked with campaigner Shahla, whose husband died from MND in 2022, highlighting the devastating impact delays to home adaptations can have on families.

People living with MND do not have time to wait. This is an important step towards ensuring people with MND get the support they need.

[MND Campaigns @mndcampaigns]

People living with MND need timely, coordinated care, but too often this isn’t happening.

That is why we are adding our voice to the call for a Modern Service Framework for neurological conditions.

We demand better for our community. Read the case for change👇

https://t.co/GLINUEpBFY

[MND Campaigns @mndcampaigns]

Read more about our Unlock the Door campaign here 👇
https://t.co/RDRozNI9zi

[MND Campaigns @mndcampaigns]

We’re so pleased to see Councillor Jonathan Hulley @Jon4Twickenham pass a motion at Runnymede Borough Council calling for faster target times for home adaptations for people living with progressive and terminal conditions, including #MND.

Jonathan worked with campaigner Shahla, whose husband died from MND in 2022, highlighting the devastating impact delays to home adaptations can have on families.

People living with MND do not have time to wait. This is an important step towards ensuring people with MND get the support they need.