'Now is the time to act' - Rob Burrow's rallying cry for MND funding

One of Leeds' biggest sporting heroes has said now is the time to make a mark for Motor Neurone Disease.

By Richard Beecham
Saturday, 30th April 2022, 4:45 am

Former Leeds Rhinos Rugby star Rob Burrow has called for the Government not to waste any more time in making funds availabvle top research a cure for MND.

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This week, £1m was pledged by Government to look into the disease, but Rob believes this should act as a catalyst for further help.

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Rob Burrow says now is the time for action.

Speaking this week, he said: "People don't have time to wait with Motor Neurone Disease.

"I know the government are keeping it because of red tape and they need to make it available as soon as possible.

"The word cure has been talked up and now is the time to react."

Campaigners accessed a pilot scheme to show how the full £50m could be accessed, an initial bid was put in for £4.25m, of which £1m was from the government with the rest from charity, which is expected to be received .

But this is not part of this £50m. It was funded separately and before that announcement. This will be available to MND researchers in August this year.

Architects this month revealed the first look at plans for the new state-of-the art Rob Burrow Centre for Motor Neurone Disease in Leeds.

The first concept designs have been released and were presented to the former Leeds Rhinos player and his family who said they were “blown away” by how it will look.

The unveiling is a major step forward in the project’s development and shows how the centre will include a central courtyard garden, large internal rooms as well as shared spaces for patients and their families and carers to relax before, during and after treatments.

Earlier this week, researchers and campaigners met this week with government ministers to thrash out a deal to make the funding more accessible to researchers, but the government has urged researchers to bid for funding using the existing method.

Speaking earlier this week, Prof Ammar Al-Chalabi, a neurologist who is leading the research into MND, said: "Right now, we are at a critical stage for MND research. We are making huge strides, but we need the extra push this funding brings.

"What we want, is to write a single, detailed proposal, explaining exactly how the research would be carried out. It is important we only do this once at the start of the five years. We then have a focus for industry partners, such as drug companies, to be able to speak to all the key MND researchers in one place, we have a clear coordinated effort across the country that makes the most of each research team working together, and we can spend our precious research time doing research, not writing endless applications for funding.

"This does mean doing things a bit differently. At the moment we would need to write between 50 and 100 separate applications for funding to access the £50m, which defeats the whole purpose of our proposal and would tie us all up in red tape. We have an idea for how to move forward and we will be meeting with government representatives in the next two weeks to see if we can make that happen."