Publication day! ✨

Our latest paper looking at what is important for care home staff when supporting residents to wander safely.

To read more: tandfonline.com/doi/epdf/10.10…

A very powerfully worded letter from Alf Dubs to NICE explaining why it is so important to assess #Tofersen the right way for people living with #ALS #MND

UK MND Research Institute MND Association My Name'5 Doddie Foundation Patients United2EndMND MND Scotland

@Eleanor_Dalley Tanya Curry Thanks for highlighting Tofersen issue today express.co.uk/news/uk/188339… MotorNeuroneDisease Patients United2EndMND, charities MND Campaigns My Name'5 Doddie Foundation MND Scotland & leading MND Research scientists Ammar Al-Chalabi Chris McDermott will fight this all the way NICE

To create a world free of motor neurone disease ( #MND / #ALS ), we first need to find effective treatments. 🔬

EXPERTS-ALS, supported by MND Association, aims to rapidly screen potential treatments and prioritise the most promising candidates.

Read more: mndresearch.blog/2023/06/21/exp…

Today Chris McDermott and I have written to the Rt Hon Andrew Stephenson CBE MP, Minister for Health and Social Care, asking for an urgent meeting to discuss how NICE evaluates new treatments for #MND #ALS in light of their decision on Tofersen.
UK MND Research Institute MND Association My Name'5 Doddie Foundation

Cmon NICE NICE you need to do something about this. Your decision to stick to the STA route is technically and scientifically illiterate.

Thank you Filipe Morais for highlighting the delay in #mirocals trial results on #BBCBreakfast yesterday! So important that we know whether +ve or -ve ASAP. Watch his excellent comments here.

Good luck for #marchoftheday

#united2endmnd
#also #mnd

united2endmnd.org/marchoftheday/

NICE, 'Computer says no' is not acceptable. UK patients and UK scientists helped develop this groundbreaking treatment for #ALS #MND , already approved in the US and EU. Please listen to us and reverse your decision.
UK MND Research Institute Patients United2EndMND MND Association My Name'5 Doddie Foundation MND Scotland

Confused as to why the UK govt would invest heavily in UK MND Research Institute (as they should!) to help the world develop more tofersen equivalents for non-SOD1 ALS, while NICE creates barriers for that very treatment the Research Institute would use as an example for their efforts. 🤔🤨

NICE as a member of #MND Nice Guideline Development Group NG42 please don’t deny access 2 Tofersen treatment for people with SOD1 #ALS #MND living in the UK. Decision should be urgently reviewed. Chris McDermott Ammar Al-Chalabi MotorNeuroneDisease

Some questions for NICE a 🧵- did you know sod1 als is caused by accumulation of misfolded sod1 protein? And we don’t know what the cause of sporadic and most genetic als is ? So this therapy is only useful for 2% of all als patients? 1/4

As a national group of MND healthcare professionals, patients and MND charities we have written to NICE requesting an urgent review of their decision about Tofersen. NICE #MND UK MND Research Institute UK MND Clinical Studies Group MND Association mndcsg.org.uk/#h.vl5d4roawb92

This decision by NICE is utterly wrong and is likely to deny a life-saving treatment for people with SOD1 #ALS #MND that is already approved in Europe and the US. A terrible, wrong-headed decision that must be changed.
Department of Health and Social Care MND Association My Name'5 Doddie Foundation MND Scotland

What can we learn from the sad failure of the Phoenix trial in #ALS #MND ?
1. A trial is designed to answer a specific scientific question
2. If it 'appears' to answer a different, more desirable question, that does not mean it did
3. You can do a trial quickly, cheaply or well

This is the patient and carer's session at #TRICALS . A patient advocate is sharing their experience of trials. Vital learning to inform our practice at the UK MND RI and for EXPERTS-ALS #MND #ALS

The first patient facing project of @ukmndri is EXPERTS-ALS. Here is a short post on how it's moving on. Hope you find exciting & interesting. The project was made possible by GOV.UK £50M investment into translational research.

#united2endmnd #als #mnd

united2endmnd.org/2024/02/19/beh…

Expressions of interest are open for our MND drug repurposing programme.

🔗lifearc.org/focus-areas/ne…

With £5m of funding for preclinical translation, we're investing in cutting-edge research to identify the most promising repurposed drug candidates for MND treatment.

#MND #ALS

What a fantastic announcement from the MND Association on their £5 million investment in a national coordinated Research Nurse network. We are really looking forward to working with the network on this great initiative #MND #ALS mndassociation.org/media/latest-n…