Government events mark Global MND Awareness Day

To mark Global MND Awareness Day, we held a Parliamentary drop-in in Westminster and a lunchtime reception in the Senedd.  

25 Members of Parliament (MPs) and 13 Senedd Members, or their representatives, from five political parties attended across both events. 

Notable attendees included the UK Government’s Minister for Social Security and Disability, Sir Stephen Timms MP, and the Welsh Government’s Cabinet Secretary for Housing and Local Government, Jayne Bryant MS. 

The Westminster event, on June 19, was sponsored by Jo Platt MP, and was attended by Eleanor Dalley, Seckin McGurik, Marc Barlow, and Ellis Millard are all living with MND. 

We’re at Parliament today hosting our #GlobalMNDAwarenessDay event 🇬🇧

MPs have been invited to attend and hear from the MND community about the challenges and issues they are facing, and how they can help.

Event sponsor Jo Platt MP, @JoPlattLeigh explains why this is an… pic.twitter.com/Et3PmKs0Jf

— MND Association (@mndassoc) June 19, 2025

Several stations were placed around the room to allow MPs, Lords and their staff to have a photo, learn about the number of people living with MND in their constituencies and to meet with members of the MND community. 

A week before, in the Senedd, on June 11, the day started with an opening address from our event sponsor and MND champion in the Senedd, Peter Fox MS, alongside our Public Affairs Manager, Sian Guest.   

There were speeches from people affected by MND  – one on her experiences of being an unpaid carer and the other concerning access to genetic testing and clinical trials. 

We also welcomed members from some of our Welsh Branches and Groups, academics, clinicians, and health and care professionals. 

I was honoured to speak today at the @mndassocWALES annual reception to celebrate Global MND Awareness Day.

We heard some very moving stories of those living with MND, and were reminded of some sobering facts.

I am very proud to be an MND Champion, and to sponsor today's event. pic.twitter.com/kjwD3ri7ZB

— Peter Fox OBE MS (@PeterFox61) June 11, 2025

Alex Massey, the Association's Head of Campaigning, Policy and Public Affairs, said: “Our Parliamentary receptions provided an important opportunity for politicians to hear first-hand about the challenges faced by people living with MND, and discuss the vital role they can play in driving change. 

“We had positive discussions across a range of key issues, including urgent access to Tofersen for those with SOD1 MND, genetic testing and the significant financial pressures faced by people living with MND. 

“As an Association, we would like to say thank you to all the people living with and affected by MND who joined us for the events, and the 1000+ people who invited their Senedd Members and Members of Parliament to attend.”