Robbed of hope but we will work even harder

SIX people will today be told they have motor neurone disease. The same will happen tomorrow and the next day…

They’ll also be told MND is terminal, their symptoms will become progressively worse and there’s no effective treatment. That has to change.we have to offer people hope.

Research is the only way to do that. It will lead us to more discoveries about the causes of MND, to effective treatments and to a cure.

Together, as a coalition of people with MND, charities – the MND Association, MND Scotland, My Name’5 Doddie Foundation – and neurologists, we believe hope will come from the development of a virtual institute entirely focused on MND research.

It will create a pipeline of new treatments for testing, improve the way clinical trials are run and facilitate greater collaboration and more efficient ways of working – with the sole aim of finding effective treatments.

Of course, any research needs funding. As charities we do what we can. But we need real investment. For the past two years we’ve been speaking to government ministers, MPS and their teams, clearly laying out plans for how a £50million investment over five years could deliver hope to the 5,000 people living with MND right now, and the thousands of others who will be diagnosed in the future.

We’ve been ignored.

The Government didn’t include our case for funding in its spending review. We’ve talked about our disappointment and it being a missed opportunity. But it’s more than that. It’s a bitter blow to the hope that people with MND, and all of us affected by it, were feeling.

But we won’t stop. As charities we’ll continue to fund as much research as we can. As researchers we’ll work harder. As people with MND we’ll make the most of every day. And together we will carry on working to convince the Government that giving hope to thousands of people is worth every penny of a £50million investment.