Motor neurone disease sufferer Ned Cullen, from Stamford, praises genetic breakthrough thanks to ice bucket challenge craze

Motor neurone disease suffered Ned Cullen, from Stamford, does the Ice Bucket Challenge with his carers to raise money for the Motor Neurone Disease Association. EMN-140109-155346001
Motor neurone disease suffered Ned Cullen, from Stamford, does the Ice Bucket Challenge with his carers to raise money for the Motor Neurone Disease Association. EMN-140109-155346001

A Stamford man living with motor neurone disease has praised the genetic breakthrough funded by the ice bucket challenge craze.

Ned Cullen, who was diagnosed with the disease in 2003 when he was a Harrier pilot at RAF Cottesmore, was among those to take part in the challenge in 2014 to raise funds for motor neurone disease and amyotrophic lateral sclerosis.

While sceptics dismissed the challenge as a funny way to douse a loved one with icy water, the craze raised more than £88m for motor neurone disease research in a single month.

Last week, it was revealed that scientists, funded with the proceeds of the challenge, had uncovered a gene variant NEK1 which will help them understand how the incurable disease takes hold.

Ned, 46, who is married to Heather and is father to eight-year-old Rory, said: “It gives us such a huge amount of hope for the future when breakthroughs are made, and it is down to all the amazing people across the world donating money to take part in the ice bucket challenge that has made this possible.

“It is such exciting news and we hope that an appropriate gene therapy is now developed quickly.”

But he added that the burden shouldn’t be placed on charities to fund research.

Ned said: “Personally I feel that with many of the neurological diseases, much of the research funding does come from charities.

“I strongly believe the Government should be increasing the levels of funding for diseases such as MND, MS, dementia and other neurological conditions as in my view, they remain underfunded when compared to other funded areas and the actual burden of the disease.”

Since Ned’s diagnosis, thousands of pounds have been raised in his name for the Motor Neurone Disease Association and a local branch of the charity was set up by his friend Ellen Chisholm.

The Mercury team backed the ice bucket challenge in honour of Ned, calling on local people to get involved. Ned visited our Cherryholt Road offices to see the team get drenched, commenting afterward that it was “funny.”