THE mother of TV presenter Zoe Ball has opened up about her experiences of motor neurone disease to raise awareness and much needed funds about the devastating condition.

Julia Peckham’s husband Rick passed away from the illness at the end of 2012.

She is now in training to become an associate visitor for the Motor Neurone Disease Association and will be helping to provide advice and support to families across Sussex.

Mrs Peckham has organised a fundraiser at son-in-law Norman Cook’s Big Beach Café at Hove Lagoon on Sunday.

She said: “I just want to help as much as I can.

“Motor neurone disease (MND) is a very rare condition and GPs may only see one case in their career.

“It has had more recognition recently with the film The Theory of Everything, but there is still a long way to go.

“It can affect people in different ways – for example Rick did not lose his speech until the last couple of days – but it is absolutely devastating

“It is also progressive. It was described to me as a bit like having all the lights switched on in your house and then you go round switching them off one by one until finally they are all out.

“MND is indiscriminate and it is so important that more research is done. Unfortunately, because it is rare, there is not as much research being done as there is with other conditions.

“There has been no new drug on the market to manage MND for 17 years.”

The Argus: Julia PeckhamJulia Peckham

Mrs Peckham is now giving something back by becoming an association visitor.

Her role will be to act as a link between people newly diagnosed with MND and health professionals.

She said: “My job will be to find out what is available for them and to help them get it.”

Sunday’s event will include a performance by magician Matt Wainwright and musical group InChoir along with a prize raffle, a children’s playground, ice cream and refreshments.

Zoe Ball will also be at the event, which runs from 2.30pm to 4.30pm, though Norman will not be attending.