Lab grown motor neurons, that are activated by light, could be used to bypass damaged motor neurons in #MND #ALS . 🔦

Barney Bryson and team have shown these neurons can improve muscle in early laboratory testing.

Learn more: mndassociation.org/research/our-r…

Another 3 months & still no results or transparency on commercial arrangements for taxpayer/charity donor funded #Mirocals trial. @MNDpatients know results may not be +ve but pls give clarity MND Association Neuroscience Institute King's MND Centre SussexNeuro united2endmnd.org/2024/01/08/mir… Darby Rimmer MND Foundation

People with MND write to Rt Hon Andrew Stephenson MP urging him to act on the decision of NICE to assess #Tofersen through a pathway that means this life changing treatment is unlikely to be approved. Please listen to us 🙏

united2endmnd.org/2024/04/13/let…

Do see Alf Dubs’ blistering letter to NICE on their inexplicable decision on the drug Tofersen, licenced for use in the US and EU. MotorNeuroneDisease will be denied this life-saving treatment in the UK. So damaging for all potential gene therapies! Do read 👇🏼

Hi Gillian Gillian Keegan MP can you help to facilitate important meeting with Rt Hon Andrew Stephenson MP regarding first truly effective treatment for #mnd #als that is being blocked by NICE?

Thanks Rob Burrow CBE Geoff Burrow Darby Rimmer MND Foundation for support

#united2endmnd

Best wishes
Lee

Pls share. We need DHSC Media Centre Department for Science, Innovation and Technology to listen urgently for MotorNeuroneDisease like Eleanor Dalley united2endmnd.org/2024/04/13/let…. Also for future of precision medicine in UK. BBC Breakfast Claire Ryan Fergus Walsh Huge thanks for your support Darby Rimmer MND Foundation Geoff Burrow

The final auction for our #MarchOfTheDay in support of Darby Rimmer MND Foundation is a cracker. Lots for Manchester United Manchester City Manchester CityWomen Manchester UnitedWomen Liverpool FC & Leeds United supporters. Silent auction. Bid here.

redwoodevents.co.uk/march-of-the-d…

Up to date facts of Motor Neurone Disease. Every week in the #UK alone, 42 people die. A person's lifetime risk of developing MND is around 1 in 300. #NoCause #NoCure for #MND #ALS #EndALS #EndMND

📢 1 month left! 📢

LifeArc have launched a new £5 million funding initiative to speed up the development of more effective repurposed treatments for people with #MND #ALS .

📝 Express your interest
📆 Deadline: 10 May 2024

More info⬇️

mndassociation.org/research/for-r…

Are you impacted by MND and based in the South West? Supporters of Yeovil Town F.C. Bristol City FC & Bristol Rovers, get behind Marcus Stewart and the Darby Rimmer MND Foundation & join Stewart’s Sports Tour around Bristol on July 20. Lots of ex pro players involved. Sign up here redwoodevents.co.uk/stewarts-sport…

You should read this too Jacoline Bouvy 👇🏼 BBC Breakfast Daily Express Rob Virtue hanna geissler

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

Thank you Alf Dubs - letter is spot on! UK MND Research Institute Patients United2EndMND MND Campaigns My Name'5 Doddie Foundation MND Scotland UK MND Clinical Studies Group await your response.

Interesting assessment of NICE decision-making. Good foundations but the formal process perhaps needs review. That's also our experience with Tofersen assessment #ALS #MND #Tofersen My Name'5 Doddie Foundation MND Association UK MND Research Institute Rt Hon Andrew Stephenson MP Chris McDermott

bmcmedethics.biomedcentral.com/articles/10.11…

Hey Ammar Al-Chalabi Brian Dickie I think they could do with better advice on gene therapies given their flawed thinking on Tofersen. Patients United2EndMND

Patients United2EndMND David Setters Rt Hon Andrew Stephenson MP Ammar Al-Chalabi Chris McDermott NICE MotorNeuroneDisease MND Campaigns My Name'5 Doddie Foundation Please note Jacoline Bouvy and speak with your colleagues. Your responses during the NICE public meeting were inadequate to answer the many questions we have. Nicola Waters

Fergus Walsh Nick Triggle Hugh Pym BBC Breakfast BBC Science News pls investigate. Vital for appropriate MotorNeuroneDisease & UK's standing as 'scientific superpower'. #MND community Geoff Burrow Darby Rimmer MND Foundation My Name'5 Doddie Foundation MND Association are with us Please see united2endmnd.org/2024/04/02/tof…

Andrew Gregory Pls read letters to Rt Hon Andrew Stephenson MP NICE from Ammar Al-Chalabi King's MND Centre & Chris McDermott Neuroscience Institute. A tragedy for @MNDpatients like Eleanor Dalley & huge blow for development of precision medicine in UK ukmndri.org/2024/03/26/let… ukmndri.org/2024/04/02/uk-…

Great work, Katy Styles! Please share MND Association MND West Kent MNDA-EastKent MNDA North West Kent MNDA East Surrey MNDA East Sussex MNDA West Sussex South West Sussex North

MND Association My Name'5 Doddie Foundation MND Scotland Frustration? I might use that word if I were stuck in traffic or had an itch I couldn't scratch. I am unable to access life changing drugs due to bureaucracy, poor commercial decisions, inertia and total failure to prioritise patients. Frustration doesn't come close. Devastated.