Ice Bucket Challenge Funds MND Breakthrough - IMNDA

Ice Bucket Challenge Funds MND Breakthrough

July 27th, 2016

Ice Bucket Challenge Funds MND Breakthrough

Money raised from the global fundraising phenomenon “The Ice Bucket Challenge” has helped to make a significant breakthrough in identifying a key gene linked to Motor Neurone Disease. Project MinE – which is in part funded by the Irish Motor Neurone Disease Association – has identified a new gene NEK1, which is believed to be a gene that contributes towards the illness.

It’s hoped the breakthrough will ultimately lead to an improved outcome for the 110 Irish people who will develop Motor Neurone Disease every year.  One person is diagnosed with MND every 4 days. MND is known as the 1000 day disease from diagnosis to death.

During these 1000 days someone with MND gradually loses control of their limbs ultimately resulting in a loss of independence. Every day things we take for granted like walking, talking and eating may become virtually impossible.

The Ice Bucket Challenge raised 1.6 million euro in Ireland alone. Over €600,000 went directly to research. This research, which includes Project MinE, is carried out by Prof Orla Hardiman and her team in Trinity.

The remainder of the Ice Bucket Challenge money is being spent on a variety of projects, including the funding of a third dedicated MND nurse whose job it is to help patients in their own homes.

The IMNDA remains committed to complete transparency about how the Ice Bucket Challenge money is spent, with all details published on its website

Aisling Farrell, chief executive of the IMNDA, says “this is further evidence of the tremendous good that has come from the Ice Bucket Challenge. We don’t yet know the impact it will have on patient’s lives, but it’s a breakthrough that will hopefully lead to potential treatments and one day a cure.  Again we would like to say thank you to those who drenched themselves in ice water two years ago“.

Ms Farrell continued; “This has been a challenging time for the charity sector, and while donations are down, we are eternally grateful to those who continue to donate generously to fight this awful illness. And the IMNDA and its voluntary board will continue to commit to complete transparency on how its money is spent.

For any more information on MND or the IMNDA please see or call 1800403403. Email


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