Mindblown: a blog about philosophy.
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LifeArc Translational Science Summit MND & Rare Dementias
LifeArc Translational Science Summit on MND and Rare Dementias – a patient view Collaboration is vital in research for complicated neurodegenerative diseases, especially with MND.
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United2EndMND – committed to the acceleration of MND research
United2EndMND Committed to the acceleration of MND research United2EndMND is committed to promoting the acceleration of MND research towards meaningful treatments and, ultimately, a cure through a robust and collaborative scientific plan led and coordinated by leading UK neuroscientists and supported by patients, their families, the MND charities, government and industry.
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EXPERTS-ALS Accelerating MND Drug Development
EXPERTS-ALS Accelerating MND Drug Development You may have seen the recent news from the UK MND Research Institute announcing that one of its first projects, EXPERTS-ALS, funded by the NIHR from the £50m successful UK government United2endMND campaign, and supported by the leading UK MND charities, is now operational.
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UK MND Research Institute: Updates for late 2024
UK MND Research Institute: Updates for late 2024 As we move towards the end of 2024, having recently marked the 1st anniversary of the formal launch of the UK MND Research Institute, we bring you 4 brief updates from the Institute and the wider UK research environment. Pieces are starting to fall into place.
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MND Association Campaign on Tofersen Access
Following our post in April 2024 regarding the concerning and emerging situation with access in the UK to the first global proven truly effective therapy for MND, Tofersen for inherited genetic SOD1 MND, the MND Association have now started a campaign.
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Please ignore any email you just received
Please ignore any earlier test post you received requesting that you enter a password. It went sent out by mistake. best wishes United2endmnd admin.
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Has it really been 3 years since the £50m campaign?
3 years on from the United2endmnd £50m UK government campaign Yes it really has been 3 years. This weekend marks the anniversary that the campaign, for a wholly fresh UK government investment in a new dynamic concept called the UK MND Research Institute, was taken to Parliament. Here is a summary of what happened, where…
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UK MND Research Institute introduces ‘buddy’ scheme
UK MND Research Institute introduces ‘buddy’ scheme Scientists need to better understand how MND affects people living with the disease so that research can be translated into useful treatments as effectively as possible.
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Is emphasis on ILTOO product delaying results & access to IL-2?
Our response to 12th August MND Association Mirocals statement Where are the results? Why fixation on Iltoo product when trial drug already exists? Do commercial interests come before patients’ needs? While the MND Association’s (MNDA) recently found energy in pursuing pharma ILTOO for answers in its latest Mirocals update is welcome we must continue to…
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Mirocals – A year of advocacy – yet still no results
Mirocals – a year of patient-led advocacy, but still no results With the 2024 summer holiday season upon us, we have just passed the first anniversary of our small patient advocacy group, united2endmnd, making the extremely difficult decision to raise publicly, the concerning situation with the extensive delay in publication of the publically funded Mirocals…
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