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We have recently launched a survey to find out how the current cost-of-living crisis is impacting households and people affected by MND. If you haven’t done so already, you can take part in the survey here.
Elaine mc Apologies for the delayed as we have had to check with our Research Team for the latest update which is: As Proleukin is not licensed for the treatment of motor neurone disease and currently remains unproven, the MND Association is not able to provide any advice about accessing the drug privately.
The MND Connect team might be able to help you with this one. When my partners mum wanted to go away on holiday last year, they were able to give me a list of companies who could provide insurance.
Have you cared for someone living with MND – now or in the past? The MND Association is part of a research project called OPTI-MND, looking at how to improve care for people with MND and those who support them. We're looking for carers, family members, and friends to share their experiences and help shape future support.
Much like MND SMART, it’s meant to be a multi-arm trial which tests several different drugs concurrently. However, just like SMART, there’s only 1 drug available in the trial at the moment! I’ll hear back within the next few weeks whether I’m eligible for it or not (they’re looking for a specific gene mutation).