23 June 2023 Campaigns

Raising Awareness of MND with politicians

Global MND Awareness Day takes place on 21 June every year and provides an opportunity for MND/ALS communities across the world to come together to raise awareness of motor neurone disease.

This week we marked Global MND Awareness Day with a series of events engaging our political representative in Wales, England and Northern Ireland. 

Raising Awareness of MND with politicians

Wales – 20 June 2023

On Tuesday 20 June, MND Association representatives and volunteers/supporters descended on Cardiff Bay to make noise and raise awareness of MND. They spoke to Members of the Senedd (MSs) at a drop-in event kindly sponsored by Llyr Gruffydd MS.

Our volunteers, who have been personally impacted by MND, spoke to MSs about their personal experiences of MND, why they got involved with the Association and what they’ve achieved over the years. 

In all, the event was a great success as 24 MSs from across the political spectrum were in attendance and after the event, many took to social media to spread awareness of MND.   

England – 21 June 2023 

On Wednesday, the MND Association hosted a drop-in event in Parliament for MPs and Peers to highlight a broad range of issues which affect the MND community. 

Campaign Volunteers living with and affected by MND spoke to Parliamentarians about the challenges they face. These include accessing benefits in a timely manner, obtaining essential housing adaptations, adequate support for carers and the disproportionate impact the rising cost of living has had on them. Volunteers also discussed ongoing MND research and access to future treatments. 

Over 65 MPs and Peers attended throughout the day, including government ministers Helen Whatley and Gillian Keegan, and Shadow Minister for Health and Social Care, Andrew Gwynne. 

MPs were also encouraged use their own platforms to raise awareness of MND on their social media and within parliament with many MPs tweeting out their support.  

Northern Ireland – 22 June 2023

On Thursday, colleagues in Northern Ireland held an event at the Millennium Forum in Derry/Londonderry to mark Global MND Awareness Day. 

Members of the MND community and the Northern Ireland branch had conversations with Members of the Northern Ireland Legislative Assembly (MLAs), local councillors and health and social care professionals, discussing the issues which directly affect people in Northern Ireland. 

There were also speakers including MLAs from across the political spectrum and the Lord Mayor. 

Elsewhere, 9 of the 11 local Councils in Northern Ireland have lit up buildings for Global MND Awareness Day. The iconic Titanic Building in Belfast, Cardiff Castle and many other buildings of importance have also done the same.