3 June 2026 Blog
By Tanya Curry, the MND Association's Chief Executive
As a charity, we’ve always worked to support people affected by MND in England, Wales and Northern Ireland, while people in Scotland have been supported by MND Scotland.
Ongoing financial challenges have led MND Scotland to scale back all aspects of its work - at the end of last year it asked us to step in and take on some of its funding commitments for MND-SMART because it couldn't continue its financial commitment, putting the trial in jeopardy. Our Board approved that change.
It’s become clear there’s a disparity between the support we offer and the support people in Scotland receive. As an example, people affected by MND who live just north of the border are entitled to less charitable support funding than people who live just south of it. That's not fair. And our concern about this inequity has grown following the financial challenges facing MND Scotland which have meant it’s temporarily stopped offering grants.
We’ve been speaking to MND Scotland over the last few months and, at least in the short term, we don’t expect it to be able to provide the level of services we give to people affected by MND in England, Wales and Northern Ireland. This leaves us with the question: should everyone with MND across the UK have the same level of charitable support from us?
AGM vote
Whatever your view, at the moment our hands are tied. Our charity articles, which give us the framework we operate in, say we can’t work in Scotland. As a membership organisation, our members must approve any change to our charity articles – with that change then also having to be approved by charity regulators. That’s why we’ve put a resolution to our Annual General Meeting on Wednesday, 8 July, asking our members to approve us becoming a UK-wide charity.
When we wrote this resolution, we hadn’t yet made a final decision on whether we should extend our work into Scotland. But on Friday, our Board decided that, given the inequity that exists, we should apply to operate in Scotland, subject to the approval of our membership.
If that approval is given, we’ll apply for charity registration in Scotland and then start working together, as an organisation, to begin giving people affected by MND in Scotland access to financial support and our MND Connect helpline. We’ll also start the detailed planning necessary to develop our other services, including our influencing approach in Scotland. In time, and once our services and influencing are in place, we will also look at how we will fundraise and develop a volunteering network in Scotland.
We don’t underestimate how much work this will be, but we’re committed – should our members agree it’s the right thing to do – to delivering our vision across the UK, and making every day matter for everyone affected by MND.
Until our members vote at the AGM, nothing will change. We’ll continue to work hard, delivering our services and support to people affected by MND in England, Wales and Northern Ireland.
We will, of course, share the outcome of our members’ vote after our AGM.
Tanya Curry, Chief Executive