THE twin sister of a York woman who died of motor neurone disease has told how they helped researchers investigate the devastating condition.

Joanne Clark said she and her sister Janine Harris wanted to do everything they could to help prevent others having to go through the nightmare of MND.

She said she understood she was the first known identical twin of someone to suffer from the illness, and therefore share the same DNA, and scientists in Sheffield hoped they could assist with understanding of the genetic disease.

Joanne, 49, of Acomb, spoke out after The Press revealed last week how Janine, a mother of five, of Derwenthorpe, had died after a desperate45-minute battle by carers and paramedics to save her life.

They gave her CPR and used a defibrillator after she stopped breathing - possibly after suffering a heart attack.

Her husband Steve said MND had destroyed a previously fit and healthy woman over the past three years, with a terrible impact on the family as they watched her deteriorate.

He said yesterday that people would say to Janine: “You’re so brave,’ but Janine would say back to them: “I’m not brave, those who go to Iraq and Afghanistan are brave.”

He said the rare neurological condition caused the degeneration of the motor system - the cells and nerves in the brain and spinal cord which controlled the muscles in the body.

Joanne said that, as the first known identical twins in the UK with one of the siblings affected by MND, researchers from Sheffield University had asked after Janine’s illness was diagnosed if she and Janine could assist them with genetic research into the condition.

“They came to Janine’s home a couple of years ago to take samples of skin and blood from each of us, so they could be studied in the lab,” she said.

“They particularly wanted to study the neurons under the skin surface.

“We felt that if we could assist in any way to help prevent families in future going through the nightmare this family has experienced because of Janine’s MND, it would be worth it.”

She said she did not know how much valuable information had emerged as a result of the research or whether it might still be ongoing.

Joanne revealed that she herself had been worried that she might also develop the disease following her sister’s diagnosis, but said nothing had emerged during the research to suggest this was going to happen, and this had been reassuring.

*The Press reported in 2015 how Joanne had raised £3,000 for Janine by organising a golf day, hog roast evening and sponsored slims to raise funds to buy some vital equipment for her new home, including a wheelchair lift.