Patients United2EndMND(@united2endmnd) 's Twitter Profile Photo

'Submission' in June sounds good, but indicates further delay! When is publication? Many questions/suggestions arise. Here's one… Will you urge Consortium @NigelLeigh3 to publish PREPRINT now so clinicians can assess results & save time? Will you King's MND Centre Neuroscience Institute?

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Martin Johnston(@MartinJ_MND) 's Twitter Profile Photo

Not long after I was diagnosed with in 2018, I joined a clinical trial called MIROCALS
In Dec 2022 the initial trial data showed a significant slowing of progression in trial participants who received low dose Interleukin 2.
The MND community are now demanding further action

Not long after I was diagnosed with #MND in 2018, I joined a clinical trial called MIROCALS
In Dec 2022 the initial trial data showed a significant slowing of progression in trial participants who received low dose Interleukin 2.
The MND community are now demanding further action
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Patients United2EndMND(@united2endmnd) 's Twitter Profile Photo

A drug locked away from MotorNeuroneDisease yet readily available from NHS for other conditions & shown provisionally to delay death in . Confirmation is needed but why is Trial Consortium developing a drug different from the trial drug? united2endmnd.org/2024/05/14/mir… Neuroscience Institute

A drug locked away from @MNDPatients yet readily available from NHS for other conditions & shown provisionally to delay death in #MND. Confirmation is needed but why is #Mirocals Trial Consortium developing a drug different from the trial drug? united2endmnd.org/2024/05/14/mir… @neuroshef
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MND Association(@mndassoc) 's Twitter Profile Photo

We'd like to acknowledge the deep frustration within the community around the ongoing wait for the publication of the MIROCALS trial results.

We share that frustration.

Read our MIROCALS statement here: mndassoc.org/mirocalsstatem…

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My Name'5 Doddie Foundation(@MNDoddie5) 's Twitter Profile Photo

Yesterday we brought together leading MND minds at our Scientific Advisory meeting. Amongst many other topics, we discussed the latest update on publication of data from the MIROCALS trial. Find out more 👇
myname5doddie.co.uk/whats-on/artic…

Yesterday we brought together leading MND minds at our Scientific Advisory meeting. Amongst many other topics, we discussed the latest update on publication of data from the MIROCALS trial. Find out more 👇
myname5doddie.co.uk/whats-on/artic…
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James Clarke(@Clarkiejc1979) 's Twitter Profile Photo

Tanya Curry⁩ and 6 members of her ⁦MND Association⁩ management team are handsomely remunerated, so perhaps they could demonstrate why and fight harder for the community that funds them. The silence is deafening. We just want the data.

⁦@Tanyacurry2⁩ and 6 members of her ⁦@mndassoc⁩ management team are handsomely remunerated, so perhaps they could demonstrate why and fight harder for the community that funds them. The silence is deafening. We just want the data. #mirocals
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Lee Millard(@onein300) 's Twitter Profile Photo

Patients United2EndMND nigel leigh King's MND Centre Neuroscience Institute Preprint, if the consortium chooses, can happen IMMEDIATELY on submission to journal. Submission in June without preprint will typically mean published in September/october! Is that acceptable community?

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Ed Slater(@edslater) 's Twitter Profile Photo

Please take a look at this open letter addressing the very important issue regarding the lack of information around the results and data from the Mirocals trial. The reason it is so important is that we are being denied access to a potentially effective treatment, Interleukin 2.

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Patients United2EndMND(@united2endmnd) 's Twitter Profile Photo

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 Consortium members. Pls go to united2endmnd.org/support-miroca… to read & sign to support our plea for transparency

Last week @united2endmnd supporters @DarbyRimmerMND @stephhoughton2 @Rob7Burrow @burrow_geoff @edslater & 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
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Patients United2EndMND(@united2endmnd) 's Twitter Profile Photo

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.

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 @MNDPatients if +ve provisional results are confirmed. Please share.
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Patients United2EndMND(@united2endmnd) 's Twitter Profile Photo

If trial results are +ve Patients United2EndMND want to see clinicians use fastest routes to access low-dose . We believe terminating contract now & finding new partner will help! See united2endmnd.org/2024/05/10/pat… MummywithMND Geoff Burrow Darby Rimmer MND Foundation

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My Name'5 Doddie Foundation(@MNDoddie5) 's Twitter Profile Photo

We believe that if results of the trial are as positive as we all hope, everyone who is eligible should have access to the drug without delay.

People with MND don't have time to wait & we'll continue to push hard for progress.

Full statement: myname5doddie.co.uk/whats-on/artic…

We believe that if results of the #MIROCALS trial are as positive as we all hope, everyone who is eligible should have access to the drug without delay.

People with MND don't have time to wait & we'll continue to push hard for progress.

Full statement: myname5doddie.co.uk/whats-on/artic…
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MND Research(@mndresearch) 's Twitter Profile Photo

We share the frustration within the community around the wait for the publication of the MIROCALS trial results.

Read our latest statement below.

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My Name'5 Doddie Foundation(@MNDoddie5) 's Twitter Profile Photo

People living with MND don't have time to wait.

Today, alongside MND Association & MND Scotland, we have written joint letters to both regulators and ILTOO pharma regarding the MIROCALS trial.

Full update 👇
myname5doddie.co.uk/whats-on/artic…

People living with MND don't have time to wait.

Today, alongside @mndassoc & @MNDScotland, we have written joint letters to both regulators and ILTOO pharma regarding the MIROCALS trial. 

Full update 👇
myname5doddie.co.uk/whats-on/artic…
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Martin Johnston(@MartinJ_MND) 's Twitter Profile Photo

My MIROCALS / IL2 UPDATE‼️
Today I was told that despite the fact I took part in the MIROCALS clinical trial & ILTOO want to supply the potentially groundbreaking drug. An NHS committee have decided that as the trial was in Glasgow & I live 150 miles away,
I CAN’T GET IT 😡

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Patients United2EndMND(@united2endmnd) 's Twitter Profile Photo

As we await final results from trial for low dose il2 for - today we ask question 'Have the Mirocals consortium chosen the right path to getting to patients in the event of positive results?' Spoiler alert, we fear not.



united2endmnd.org/2024/05/14/mir…

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David Needham(@Ned70) 's Twitter Profile Photo

Some positive news to counter the recent understandably negative sentiments towards the MND Association @Mirocals & @IltooPharma. The news of a mechanism for early access to IL-2 is very encouraging.

Some positive news to counter the recent understandably negative sentiments towards the @mndassoc @Mirocals & @IltooPharma.  The news of a mechanism for early access to IL-2 is very encouraging.
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