We're tagging other charities that support research to ensure that they're aware of this issue, which could affect them too:
Cancer Research UK Policy MND Association Dementia UK Parkinson's UK British Heart Foundation Diabetes UK Alzheimer's Society Prostate Cancer UK Teenage Cancer Trust The Brain Tumour Charity 40TUDE LifeArc

We're raising awareness of a critical issue in NICE's appraisal process

Today MND's in the firing line, tomorrow it'll be another disease. Join us & urge NICE to address this & work w/Biogen to bring tofersen to people w/ SOD1-MND in the UK

Open Letter: myname5doddie.co.uk/whats-on/artic…

Nearly 600 people have signed - God Bless and Thank you 🙏 Let’s please get this to 1000 - it only takes 2 minutes to sign, but it could be a life line for MND sufferers and families 🙏🤞

Please read letter below & sign to offer support. This is regarding results of #mirocals study. Until they are released we’ll continue with just the 1 med Riluzole- limited benefit. Would you like a bash at being with loved ones for longer? I know I would. Retweets help too 😊

It's over 510 now! Add your voice if you have not yet.
#united2endmnd
#als #mnd

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

Show your support by signing our open letter to the Mirocals consortium. You can sign the letter using the link below

united2endmnd.org/support-miroca…

Please read the messages from people affected by MND - it is absolutely heartbreaking that we are being kept hanging on, nearly two years since the trial ended MND Association King's MND Centre Neuroscience Institute SussexNeuro QM Neuroscience

Does ANYONE (other than MND sufferer's, and families) “CARE” about potentially effective Treatments ?? Mirocals non release of Trial data is a SCANDAL 🤞🙏

We’ve launched a new booklet about Inherited #MND . It gives an overview of the condition as well as guidance about genetic counselling and testing.🧬

Find this booklet and more on our website - mndassociation.org/inheritedmnd

Richard Evans MND Association Some may think a little harsh, but if you could engage with this ASAP it would be a fantastic start united2endmnd.org/support-miroca… We look forward to working with you. Good luck! Darby Rimmer MND Foundation Rob Burrow CBE Geoff Burrow Ed Slater

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

How long is too long to wait on results?With average life expectancy 3yrs after diagnosis, I’m going to be bold & suggest 17mnths IS TOO long. We just want a chance at living for longer. Please click on link & show your support by signing letter. Retweets welcomed too 😊

To be very clear. Lives could be prolonged if #MND patients were given Proleukin. Commercial arrangements HAVE been prioritised over patient's lives. MIROCALS consortium must take immediate remedial action to get this drug to patients NOW. Please sign open letter use link below.

MND Association it says something when your highest profile patients feel compelled to write an open letter. Patients want and deserve treatment with Proleukin. We have been BEGGING for 16 months. MIROCALS Consortium must answer patients and take action Darby Rimmer MND Foundation Rob Burrow CBE

Petition: Review and reform Carer's Allowance to increase support and reduce overpayments petition.parliament.uk/petitions/6604…

Thank you Geoff Burrow We have worked with some wonderful people in the #MND community over the years including the marvellous Davina Rivers It is indeed a team effort & Eric was and would be a great part of that team.

Geoff Burrow Thanks Geoff Burrow Your support means so much to us. It is a privilege to work with you, your family and other team members. We are #United2EndMND Followers can show their support by completing a brief form here united2endmnd.org/support-miroca…

As part of the Carer Poverty Coalition we’re sharing a new petition:

Review and reform Carer's Allowance to increase support and reduce overpayments - Petitions petition.parliament.uk/petitions/6604…