17 October 2025 News
The Association has attended every major political party conference across England, Wales and Northern Ireland to speak directly with decision makers about the issues people with MND.
We met with 99 politicians from across the political spectrum, including Health and Social Care Secretary Wes Streeting, Minister of State for Care Stephen Kinnock, Plaid Cymru leader Rhun ap Iorwerth and UUP MP and former Health Minister Robin Swann.
Prescribe Life was frequently discussed, calling on the Government to support the NHS to find capacity within the system to enable all eligible people with SOD1 MND to access tofersen.
It’s party conference season and our @mndcampaigns team have been busy attending conferences from across the political spectrum.
— MND Association (@mndassoc) October 10, 2025
Earlier this week, they were at the #CPC25 @Conservatives party conference, where they met with 27 MPs to discuss how they can better support people… pic.twitter.com/LXbzj1SEWS
The Association proposed a standardised MND genetic testing pathway, prioritising fast-tracking at point of diagnosis, consistent referrals, access to genetic counselling, and expedited results.
We argued for long-term investment in the recruitment, training and retention of the genomics workforce.
We also called for people with MND to be fast-tracked to support for home adaptations, to ensure they can live safely and independently as their disease progresses.
Great to have a conversation with the Secretary of State for Health and Social Care @wesstreeting tonight.
— MND Campaigns (@mndcampaigns) September 28, 2025
We look forward to continuing the important conversation about supporting people with #MND throughout #LAB25. pic.twitter.com/WJGrWvmHS4
As well as UK party conferences, we attended party conferences in the devolved nations. We met with MPs and Senedd Members to discuss our MND Manifesto for Wales ahead of the upcoming Senedd Elections in Wales.
In Northern Ireland, we talked about standardising the genetic testing pathway and access to emerging treatments.
We were delighted to be joined by Connaire Quinn, who has SOD1 MND and recently become the first person in Northern Ireland to access tofersen.
Last weekend, we attended the UUP Conference and had the opportunity to highlight the urgent need for better services in Northern Ireland for people with #MND. @RobbieButlerMLA introduced Patrick from the MND Association and Conaire, who lives with MND. Conaire shared his… pic.twitter.com/z4bW5kcTgQ
— MND Campaigns (@mndcampaigns) October 14, 2025
Sian Guest, Public Affairs Manager for Westminster and the Devolved Nations, said: “Party conferences are a crucial opportunity to represent our community and engage with MPs to push for change.
“We use our presence at these events to ensure decision-makers include people with MND at the heart of their political agendas.
“When diagnosed, you should not have to wait months for the right adaptations to your home or the results of a genetic test to see if your family could be at risk.
“We will continue to champion people with MND at every opportunity and ensure the people we support are respected, acknowledged and listened to.”
Great to speak with Minister for Care, @SKinnock at #LAB25.
— MND Campaigns (@mndcampaigns) October 1, 2025
We talked about government investment in innovation and the need for system change to expedite access to new and innovative treatments for people with #MND. pic.twitter.com/0Iz1mGLtGL
The Association organised a special discussion panel at the Labour Party Conference in Liverpool.
Among the speakers were our CEO Tanya Curry and Trustee Marc Barlow, who was diagnosed with MND in July 2023.
The discussion centred on ask what needs to happen across research, regulation, and clinical delivery to ensure people with MND have targeted and effective care.
