We have had over 400 signings and messages so far supporting Darby Rimmer MND Foundation Rob Burrow CBE Ed Slater Marcus Stewart, partners and Geoff Burrow - Open letter to the Mirocals consortium. See all the messages here and perhaps add your voice?

united2endmnd.org/2024/04/30/wou…

#united2endmnd

Please show your support for letter sent to MND Association King's MND Centre Neuroscience Institute SussexNeuro QM Neuroscience last Monday by Darby Rimmer MND Foundation Geoff Burrow Rob Burrow CBE Ed Slater on TRANSPARENCY on #Mirocals trial here united2endmnd.org/support-miroca… MotorNeuroneDisease Challenging MND Dodd1e5 Gr4nd S7am Team #MND

Last week Patients United2EndMND supporters Darby Rimmer MND Foundation Steph Houghton MBE Rob Burrow CBE Geoff Burrow Ed Slater & Jo, Marcus & Louise Stewart asked vital questions of 4 UK #Mirocals Consortium members. Pls go to united2endmnd.org/support-miroca… to read & sign to support our plea for transparency

Huge thanks Peter Ash #Corrie for supporting Darby Rimmer MND Foundation Rob Burrow CBE Geoff Burrow Ed Slater Marcus & Louise Stewart letter to MND Association Neuroscience Institute King's MND Centre BSMS Clinical Neuroscience QM Neuroscience asking for TRANSPARENCY on #Mirocals trial.
Pls support @ united2endmnd.org/support-miroca…

So true and agree Tanya Curry this needs addressing urgently for those who are eligible for Tofersen. Do you have any thoughts on being denied a second treatment for mnd (Proleukin) due to MND Association and other Consortium members agreeing a deal with ILTOO as well?

#attackmnd

Tanya Curry Daniel Boffey It's also vital Patients United2EndMND MotorNeuroneDisease challenge 'accepted ways' of accessing new treatments & demand transparency required of a taxpayer/charity funded trial like #Mirocals , especially when our lead charity is a member of Consortium. MND Association King's MND Centre SussexNeuro

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…

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

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

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 👇🏼

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

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-…

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.

Nicola Waters We need transparency. Proleukin, the il2 form used in trial is sitting on shelves in nhs pharmacies, in plentiful supply globally & yet ILTOO chosen as partner going forward by the consortium. A pharma without a ‘developed’ product/not commercialised/produced in clinical scale.

MND Association you are part of the MIROCALS Consortium. YOU chose ILTOO. YOU agreed a deal that did not prioritise patient access to a life changing drug - Proleukin. Reprehensible. Still being directed, pushed and dragged by patients on this issue Tanya Curry

Please explain why the contract was given to a tiny biotech company with no money, no manufacturing facilities, and a different product to that trialled. And then tell us what you are doing as a member of the consortium to challenge that.

If we had transparency we've requested for months on process followed by #Mirocals Consortium to select commercial partner #Iltoo , it would help. Why a small company? Why a NEW drug when trial drug #Proleukin already available? Lessons MUST be learned for future trials-see image

Broken record

Whatever the data will be, will be. It’s the processes that have got us to this situation that is more worrying. Serious lessons need to be learned.

#attackmnd