#mirocals trial ended nearly 2 yrs ago & we still await results! Typical survival once diagnosed with #mnd is just 2yrs! Something wrong here? If touched by #mnd please support Darby Rimmer MND Foundation Rob Burrow CBE Ed Slater & Marcus’s OPEN letter to the consortium. BW Lee
#united2endmnd

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.

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…

Please read this important letter and consider supporting. People with MND are desperate for answers. Thank you to Darby Rimmer MND Foundation Steph Houghton MBE Rob Burrow CBE Geoff Burrow Ed Slater and Marcus and Louise for their leadership. 🙏

Huge thanks Darby Rimmer MND Foundation Steph Houghton MBE Rob Burrow CBE Geoff Burrow Jo & Ed Slater Marcus & Louise Stewart for sending open letter requesting TRANSPARENCY on commercial contracts for #Mirocals to involved scientists & MND Association To show support please see united2endmnd.org/support-miroca…

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

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

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

UK MND Research Institute unites MotorNeuroneDisease & family/friends, MND Research scientists, NIHR Research Medical Research Council & charities MND Association MND Scotland My Name'5 Doddie Foundation @lifearc to accelerate search for a cure #United2EndMND Neuroscience Institute King's MND Centre Chris McDermott Kenny Logan See ukmndri.org 2/2

It’s 5 years since Lee Millard and David Setters first started their campaign for a new drive for translational research. Supported by the amazing Chris McDermott and Ammar Al-Chalabi What a day for them all!! 🥳🔬🧪

ADVOCATING for others takes TIME & ENERGY…Jennie Starkey gives some of her precious time living with #MND to being Patients United2EndMND with @MNDpatients by writing another wonderful blog. Pls have a read #United2EndMND MND Association My Name'5 Doddie Foundation MND Scotland LifeArc UCL Neuroscience Neuroscience Institute

Required reading for MND Research scientists & charity executives. Jennie Starkey puts TIME & ENERGY into ADVOCATING with this excellent blog. Please read & share King's MND Centre Neuroscience Institute @UCLion Sussex MND Network Edinburgh Neuroscience The Walton Centre MND Association My Name'5 Doddie Foundation mndjourney.wordpress.com/2023/10/23/adv…

Thanks to our incredible supporters and the generous donations, since we launched Darby Rimmer MND Foundation in 2019, our care grants partnership with the MND Association has made a real difference for those fighting mnd.

Here is our grant support in numbers

#attackmnd

A word from Scott Hastings about this year's Just a Sports Quiz.

Get your tickets today at euanmacdonaldcentre.org/events/just-sp…

We are @patientsUnited to accelerate progress towards meaningful treatments & a cure for #MND . Keeping an independent voice & working with MND Research scientists & My Name'5 Doddie Foundation Darby Rimmer MND Foundation MND Association MND Scotland LifeArc to achieve those goals - see united2endmnd.org/who-are-we/

Patients are at the core of the #united2endmnd coalition working together with #mnd #als charities incl My Name'5 Doddie Foundation Darby Rimmer MND Foundation MND Association & MND Scotland. Subscribe to our website & X (twitter) account Patients United2EndMND for updates.

united2endmnd.org

This is the first therapy that offers HOPE to ppl living with MND.
MND Association MND Research PLEASE have these difficult conversations. Those with MND should be able to concentrate on time with their families, not having to fight for information. Time is of the essence here 🙏🏼🙏🏼🙏🏼

A polite & simple ask of #Mirocals Consortium including @MNDresearch scientists & MND Association from Geoff Burrow Darby Rimmer MND Foundation MummywithMND Nicola Waters Nicola McFarlane Jennie Starkey carol anderson David Setters Lee Millard united2endmnd.org/2023/10/10/mir… Clarity, please, for MotorNeuroneDisease!

Nicola McFarlane MND Association Well said - so many suggestions for MND Association to improve patient mental health:
1. Advocate with genuine actions
2. Listen to our suggested needs
3. Answer our questions
4. Don’t give false hope
5. Help us access #Proleukin
That’s my top 5! #WorldMentalHealthDay #United2endMND