Mindblown: a blog about philosophy.
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Now that would be a nice problem to have, or would it?
Now that would be a nice problem to have, or would it? With the best will in the world, we cannot expect our dedicated researchers to work alone and carry the full burden of the challenge to defeat this disease.
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Finding Hope with MND: You’ve got MND! What next?
Finding Hope with MND: You’ve got MND! What next? One of our United2EndMND patient team, Ben lighting, has recently published a book. Ben was thinking back to the time 3 1/2 years ago when he was diagnosed and thought about writing a book that would be useful to people facing this difficult time.
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Moving forward with the UK MND Research Institute
Moving forward with the UK MND Research Institute It is now approaching five years since the United2EndMND £50 million government campaign was born that led to the creation of the UK MND Research Institute (UKMNDRI). Working alongside leading charities, the Institute was founded with a clear purpose, to accelerate fundamental MND research and hasten the arrival…
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Tofersen Access Community Update
Tofersen Access Community Update Six weeks have now passed since Dr Rachel Jakeman delivered a petition and open letter to No.10 Downing Street calling for urgent action to improve access to tofersen, the first precision medicine treatment for people living with SOD1-related motor neurone disease (MND). So where are we now? What has happened since?…
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Tofersen petition and open letter handed to No. 10
Tofersen Access – UK Government failing to ensure effective drug reaches eligible patients Almost 2 years ago we posted about the first truly effective treatment for any form of MND, tofersen (for SOD1 gene mutation mediated disease) and the growing delays in getting to UK patients.
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Covid-19 Boosters – Statement by UK Leading Neurologists
Covid-19 Boosters in the UK – Statement This autumn is the first since the Joint Committee on Vaccination and Immunisation (JCVI) changed its policy on who can receive Covid-19 vaccination boosters following the change to exclude the majority of the ‘clinically extremely vulnerable’ groups including MND.
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Breaking the mould?
Breaking the mould? More news this week from the EXPERTS-ALS platform.
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New page on our website
New UK Trials page on our website We have recently added a new page to our website, UK Trials. This page is a simple summary of the current UK hosted disease treatment trials, that is trials/studies testing potentially disease modifying drugs. We are in no way replacing the excellent MND Association trial pages, and nor…
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United2EndMND Statement on MIROCALS results
United2EndMND Statement on MIROCALS results It’s now been nearly three years since completion of the MIROCALS Phase II trial and two and a half years from the announcement of the top line results in December 2022. Finally, the long awaited peer reviewed paper, detailing the results and conclusions, was published yesterday (9/5/2025) in the highly regarded international…
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UKMNDRI – The Role of the Discovery Network
Collaboration in MND Research: The Role of the Discovery Network We have been excited to hear about the fantastic work being undertaken by My Name’5 Doddie Foundation, (one of our major partners, founding member and contributors to the UK MND Research Institute (UKMNDRI) funding and work) with their Discovery Network grants.
Got any book recommendations?
We are United2EndMND - Changing the conversation 