Edinburgh mnd research

[Olivia H]

I am rubbish at IT so not sure if this link will work, but was on BBC Scotland news page yesterday, the research currently taking place in Edinbugh and evidence of the potential role of mitochondria in cells in mnd, and that boosting it via drugs/supplements could be a way forward for therapies/damage repair?

Let's hope!

https://www.bbc.co.uk/news/uk-scotland-edinburgh-east-fife-55718363?

[Gordan1111]

Let's hope something may come out of Olivia. I think it's a development from the Doddie Weir Foundation so may hear more on the Dodcasts

[nunhead_man]

Hi there

I think it's a development from the Doddie Weir Foundation so may hear more on the Dodcasts

If you read the report you will see that the work is being carried out by an Edinburgh research team funded by the Harry Potter author JK Rowling with research funds provided by the MND Association and others including the Doddie Weir Foundation.

I guess though given your reaction that the publicity has come from the Doddie Weir Foundation together with the information that this is in some way a way to a cure when it's research on motor neurones in a dish so another plank in quite an extensive wall. I know Doddie Weir really wants a cure, as I do but I'm wondering if this publicity is helpful in that regard?

[Olly]

Hi all , i'm feeling pretty optimistic about these trials. we're living in the best time for science and medicine and if you look at the thing's discovered, eradicated and engineered in the last few decades then i personally do think its possible they'll find something for us . Remember, the glass is always half full. take it easy folks , Olly

[Lynne K]

MND Smart is now going to see if any repurposed medication positively effects the fault that the research found. So this is brilliant. I’m registered for MND Smart the same of lots of others who may bring on here. We all will meet with the local to us MND Smart team to manage our research medications at our use MND Clinic appointments. My next appointment is 25th February at Salford Royal. Lynne

[jd58]

I've registered too

[rachelr]

I registered too and apparently MND Smart are talking to MND Consultants around the UK to extend trials after lockdown so have hope, all.

[Crell]

Yep, I'm registered with MND SMART. I also emailed the Edinburgh research team: I have c9orf72 fALS, and it's a quick hop over the border to Edinburgh for me - I used to travel there for meetings every month. MND SMART due to extend to my Newcastle MND research centre soon (whatever that means).

[Ellie]

Welcome to the Forum, Crell.

Yes there sure is some exciting news for those with c9 ALS - hopefully it will come from experimental to actual treatment sooner rather than later.

Love Ellie.

[bilvers]

Registered with MND Smart at Cambridge but all research people have been pulled off onto COVID-19 research, very frustrating .

[GaryM]

Registered with MND Smart at Cambridge but all research people have been pulled off onto COVID-19 research, very frustrating .

This damned virus has a lot to answer for.

[SueM]

I was asked by my consultant on Wednesday at my last MND clinic appointment if I’d registered, yes I had. This makes me hopeful that it won’t be long before it’s extended to all parts of the UK

[Banned]

Trying to look into this to find out more. Are trials being offered now?

What are the eligibility criteria?

I am guessing that people with Upper Motor Neurone damage, who exhibit spasticity will be interested? Is that the case???

[matthew55]

I am a bit confused. A cure for me would involve re-animation. Is this how the zombie apocalypse starts? 😂x

[SueM]

Graham there will be centres all over the Uk, taking part in this trial, I think Salford are up and running, for me Newcastle was the nearest. I believe the eligibility criteria was fairly broad.