Mindblown: a blog about philosophy.
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Developments at UK MND Research Institute
Forging ahead – developments at the UK MND Research Institute As we enter the summer period we thought you might like to see the following updates from the UK MND Research Institute (UKMNDRI) that you might have missed.
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Mirocals status – July 10th 2024
Mirocals results – the wait goes on… The June 24 MND Association update on Mirocals was welcome, because of the increasing urgency shown by our charity. It also served to confirm the My Name’5 Doddie Foundation’s hint in its June 6 statement that the ILTOO Managed Access Programme (MAP) might reach more patients than previously expected and…
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Global MND/ALS Awareness day
Today is global MND/ALS awareness day. This awareness day, Rob Burrow’s family will be in our thoughts and those of many others after he passed way on the 2nd June. Sadly, Rob’s family is not alone as about another 160 families will also suffer heartbreaking loss during the month.
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My Name’5 Doddie Foundation Statement on IL2 today
We would like to thank the My Name’5 Doddie Foundation for their important statement today regarding the Managed Access Program (MAP) for ILT-101 from Pharma ILTOO.
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Mirocals: Freedom of Information requests to Universities
In March, the United 2 End MND patient group sent Freedom of Information requests* to the 4 universities who were part of the Mirocals trial: Sussex University, King’s College London, Sheffield University and Queen Mary University of London. *note – charities are not covered by the Freedom of Information Act 2000 and so we were…
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Mirocals – taking fastest route to access low-dose IL-2?
Is the Mirocals Consortium taking the fastest route for patients to access low-dose IL-2? The Mirocals trial used a branded drug (Proleukin™️) that was already licensed and in use for cancer treatment. This should have meant the drug, if proven effective, would reach patients quickly, but sadly, we are faced with a continuing delay in…
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We ask MNDA to consider terminating ILTOO contract
Patients United ask MND Association & Mirocals Consortium to consider terminating ILTOO contract Last Friday, May 3rd, we asked the MND Association and professors involved with the Mirocals trial: Our message has been acknowledged, but as yet we have no substantive response. Neither, as far as we know, do the high profile patients. Our message,…
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Would you like to add your voice to Mirocals transparency request?
High profile patients ask Mirocals consortium for transparency – Add your voice? Last week our high profile patients (we hope they don’t mind being called that?), Stephen Darby, Rob Burrow, Marcus Stewart and Ed Slater along with their partners and Geoff Burrow wrote an open letter to the Mirocals consortium. Our community has responded with…
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Remembering fellow campaigner and our friend James Clarke
We are all heartbroken by the news of the sudden and unexpected passing of James Clarke. James was a welcome new member of our informal team in 2023 and his fund raising for the My Name5 Doddie Foundation was simply nothing short of staggering. We are all slung together by our (and effectively our family’s)…
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Letter to Rt Hon Andrew Stephenson CBE MP
Letter to Rt Hon Andrew Stephenson CBE MP This week, following the letter sent from the UK MND Research Institute co-directors, Professors Ammar Al-Chalabi and Chris McDermott, to the Health Minister, Rt Hon Andrew Stephenson MP, we have sent the following letter representing the wider patient community regarding the serious situation regarding the National Institute…
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