Claire Sullivan

It really just shows why there's so much good research interest in the disease.

but also highlights how heartbreaking it is.

We just don't know enough about the disease to help people in the way that they deserve to be helped.

Yeah, so people notice a range of different symptoms.

They might have stumbles or falls or ability to control their feet, tremors in their body and their hands.

Right.

Weird neurological changes, but there's no real definitive symptoms that you need to look out for.

The scary thing is your lifetime risk of getting MND is 1 in 300, which is incredibly high for such shocking diagnosis.

I think with all healthcare conditions, you know, go and see your GP, for instance, you think there's something up.

But equally, it is still on the cusp of being considered a rare disease.

And I wouldn't want you to alarm your listeners because...

whilst it's devastating and shocking, it's not as common as many of the things that we do every day that cause health block sequences, such as drinking and sugar and all those known health risks.

Incredibly well, actually.

We have some of the best minds, some of the best research institutes, some of the insights that are coming out with the developments in quantum computing and computer power around genomics and the understanding of

of the human genome are remarkable, as well as the really high quality science, the basic somnices that occur in labs all around the country.

So we're really, really well placed.

We've got good work looking at linking and harmonising data so we can better understand the disease.

And, you know, the work of Neil O'Donoghue fundraising to help increase that research capacity is his lasting legacy and has changed the research in the country.

You're welcome.

Thanks for having me.