Tofersen is one of very few drugs proven to help some people with #MND #ALS . The community’s voice on this is unanimous and we support My Name'5 Doddie Foundation's pledge to take action. Please reconsider your decision, NICE

Tofersen is a high-tech genetic therapy for SOD1-ALS which works. The decision by NICE to assess it like a routine #MND #ALS therapy means it is likely to be rejected for UK patients, even though it is already approved in the USA and Europe. We urge NICE to reconsider

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

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

Professor Ammar Al-Chalabi discusses the latest progress in Motor Neurone Disease ( #MND ) research, the roles of genetics and sports, and hopes for a cure, on The Mid Point podcast with Gabby Logan.

🎧Listen: open.spotify.com/episode/4723l3…

Read more 👉maudsleybrc.nihr.ac.uk/research/motor…

More great news for UK MND translational research! My Name'5 Doddie Foundation has announced £6m available across two funding programmes: the annual Advancing Treatments Award and a new Discovery Network. myname5doddie.co.uk/research/fundi… #MND #ALS

Breaking news - Tofersen approved by EMA for use in #ALS #MND caused by SOD1 mutation (about 2% of people). UK MND Research Institute scientists including both our directors have been at the forefront, contributing to the trial and advising the EMA.
investors.biogen.com/news-releases/…

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…

⏰ 2 weeks left before applications close- still time to apply! UK MND RI is looking for a Senior Research Communications Officer to join our team #MND #ALS kcl.ac.uk/jobs/083227-se…

Our co-director Chris McDermott recently joined an expert panel discussing a shared vision to transform the way potential #MND #ALS therapies are assessed, for the LifeArc MND Translational Challenge. Chris presented on EXPERTS-ALS experts-als.uk

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…

Thank you to MND Association for working with patients & families to create this incredibly moving series of films. They show the reality of living with MND & what life is like for people affected by this cruel disease- why accelerating the search for a cure is so important #MND #ALS

To create our MND awareness campaign, we used three stories of people affected by MND; Mike and Zoe, Louise and Rob, and Mike.

We'd like to thank them all for the bravery they’ve shown in allowing us to film what life is like living with #MND .

Read their stories below.

Exciting new opportunity to join the UK MND RI team. Please see Senior Research Communications Officer role open for applications kcl.ac.uk/jobs/083227-se… #MND #ALS

Our congratulations to Rob Burrow and Kevin Sinfield on being awarded CBEs - such inspirational people in the MND community. So well deserved!

Another great #alsmndsymp poster session from the #UKMNDRI programme leads Prof Janine Kirby Dr Ahmad Al-Khleifat Martin Turner and Kevin Talbot Oxford MND Research and co-directors Ammar Al-Chalabi Chris McDermott #ALS #MND

Great #alsmndsymp talk from Prof Andrea Malaspina #UKMNDRI programme lead on harnessing biomarkers in clinical trials #ALS #mnd

Great to attend the #alsmndsymp poster session last night with #UKMNDRI programme lead Dame Pamela Shaw #SITraN Neuroscience Institute; Sophie MND Association; and Jane MND Scotland Looking forward to day 2!

Great meeting with Challenge Works to discuss the longitude prize for #ALS #MND . Watch this space!

#alsmndsymp