Over the last few weeks, there has been a discussion in the MND community following media coverage of research into a drug, or compound (NVG645), called ellorarxine. This coverage has suggested that this is an exciting development in MND research. Following this, some people in the community have asked whether we should be funding further research into it or be campaigning to get the Government to do so. So we thought it would be helpful to give an update. 

We first published news about the early stage testing of this compound in the laboratory on 07 January 2025. The research published so far has shown that in healthy mice, and mouse and rat cells in a dish, the compound showed a number of effects. This led researchers to hope that, if the drug were to have a positive effect in motor neuron disease in humans, it might be a potential treatment for MND. 

We hope this turns out to be the case. However, ellorarxine is a newly created compound and it still isn’t known if it is safe for humans to take. And, if it is, we don’t know whether it will have an effect on motor neurons in humans. In science, there are many examples of drugs that seemed promising in the laboratory, but did not then have a beneficial effect in humans. 

Ellorarxine has shown potential effects that will require further investigation. But from the data published so far, it’s one of the many drugs or compounds in a similar position in the worldwide pipeline, rather than being an exceptionally exciting one.

My Name'5 Doddie Foundation will always campaign as part of the MND community for the increased government investment into MND research, in the right areas. But from the information and published data we’ve seen so far, it’s still very early days for ellorarxine. And so, along with our colleagues in the other main charities, we are not currently planning to make the case to government for extra funding for this. 

This judgement is based only on the publicly available data. It may be that Nevrargenics, the private, shareholder-owned company behind ellorarxine, has more data and we would welcome seeing that. If the company showed compelling evidence that gave us confidence there was a high chance of this becoming a treatment, obviously we would review this position. Our grant application process is clear and transparent and we welcome applications from researchers who believe they have promising research. Every application goes through robust review processes, involving a diverse panel of multidisciplinary experts, to ensure we are spending our supporters' money on the very best and most promising research.  

Given the interest in this within the community, we will keep a close eye on developments and keep you updated. 

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