News

On 3 March 2025, MND Scotland and My Name’s Doddie Foundation welcomed people with and affected by MND from Scotland, and MND researchers from across the UK, to Dynamic Earth in Edinburgh for our inaugural CORE event. It was a wonderful experience which provided a platform for the MND community to come together and share their knowledge, opinions and experience on MND research through our shared goal of a world without MND.

There has been ongoing coverage in the UK media of an early-stage compound, ellorarxine, that targets the retinoic acid receptor (RAR).

During 2024, encouraging research was published by the Universities of Durham and Aberdeen that demonstrated that a new drug, Ellorarxine, was able to reduce the death of rodent neurons grown in a dish, including those containing an alteration found in some forms of MND. 

Following a review of stage 1 interim analysis data for amantadine, it has been decided that amantadine will continue to be evaluated as part of the MND-SMART trial. 

To round up the local events our Research Lead, Paul Jensen, has brought together some quotes from attendees, who kindly shared with us their thoughts on what the events meant to them. 

MND Scotland and My Name’5 Doddie Foundation are teaming up to host a day-long event for people in Scotland affected by MND and MND researchers.

We welcome the announcement this morning from NICE that they will now appraise the drug tofersen via the Highly Specialised Technologies (HST) route.