Last Friday Patients United2EndMND asked UK #Mirocals Consortium members if MND Association Neuroscience Institute King's MND Centre QM Neuroscience @Sussexneuro would terminate contract with #Iltoo united2endmnd.org/2024/05/10/pat… Still no reply to Darby Rimmer MND Foundation Geoff Burrow Rob Burrow CBE Ed Slater & Marcus Stewart.

Yes WHY is there still no news for the IL-2 Trial data results ?

Seems all that people are interested is about “Fundraising” ? So, if data not released soon - then maybe no more fundraising until released 🤷‍♂️

Still time to show your support for high profile patients' letter to MND Association King's MND Centre Neuroscience Institute QM Neuroscience SussexNeuro We need transparency on commercial arrangements on #Mirocals so regulators & health professionals concentrate on fastest pathways to @MNDpatient access

Sadly we are still waiting for pivotal #mirocals low dose interleukin 2 trial results. No update this week but have added new page to website showing history going back over a year of campaigning just to get the results! (1/2) &

#united2endmnd #als #mnd

united2endmnd.org/mirocals-histo…

It's been 19 days since patients wrote to Tanya Curry MND Association to ask questions regarding their concerning choice of commercial partner. Still no answers to questions we have been asking for over a year. The deal did nothing to get Proleukin to patients. We want to know why.

Given the crossover with #mnd I've signed Dementia UK's letter to party leaders urging them to put dementia on the agenda this election.

Please do add your name if you get a moment.

Dementia UK #PutDementiaOnTheAgenda action.dementiauk.org/sign-letter-pa…

A reminder that our deadline for research funding applications is Friday 10th May

#attackmnd
#darbyrimmerMNDfoundation

Visit our website for more information or check our bio links

Still time to show your support for high profile patients' letter to MND Association King's MND Centre Neuroscience Institute QM Neuroscience SussexNeuro We need transparency on commercial arrangements on #Mirocals so regulators & health professionals concentrate on fastest pathways to @MNDpatient access

If you haven't added your name to Darby Rimmer MND Foundation Rob Burrow CBE Ed Slater Marcus Stewart & partners & Geoff Burrow's open letter to the Mirocals consortium please do.

We have waited too long for the results of a 200 person trial that ended nearly 2 years ago.

#united2endmnd

#TheSeekers ' late Judith Durham lost her husband, Ron Edgeworth, to #MND in 1994. MNDA Merseyside made a collection when they played the Royal #Liverpool Philharmonic Hall #otd 2014.

Tragically, the @LiverpoolPhil also lost their Principal Trumpet, Rhys Owens, to #MND in 2022.

Please share MNDA South London Branch Bruce Aitchison Happiness is Egg Shaped Challenging MND Mind Over MND. MNDA Merseyside MNDACheshire MNDA CARDIFF & VALE A View From My Camera 🏔️ Paul @ Munros 4 MND 🏔️ Reading & West Berks MNDA MND Association - South Lancs Branch MND Association | Northern Ireland MNDA West Yorkshire MNDANorwichWaveney All About Alie Ian Pratt MNDF Stand Against MND

I've #justsponsored Jonathan Holland, who's fundraising for West Sussex North on JustGiving. Donate now justgiving.com/page/jonathan-…

Please add your signature to letter to Mirocals Consortium members from our high profile patient colleagues here united2endmnd.org/2024/04/30/wou… Clear answers should help speed access to life prolonging drug for MotorNeuroneDisease if +ve provisional results are confirmed. Please share.

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