A Caistor woman has spoken of her ‘delight’ after a drug she has been campaigning for has been allowed to be given after a judge ruled it was ‘in the patient’s best interests to receive the unlicensed treatment’.
Nikki French had the heartbreak of watching her husband Andy die from Sporadic CJD (Creutzfeldt-Jakob Disease), a rare and fatal degenerative brain disease.
Since then, together with family and friends, the courageous mum of two has raised almost £30,0000 in Andy’s memory.
The money has gone to the Cure CJD Campaign, which is funding research into the pioneering treatment PRN100.
Nikki said: “When Andy passed, my brother and I wanted to honour his memory by raising money for research into one day possibly finding a cure for CJD.
“Our main aim was to ensure that no other family had to cope with the devastation that CJD causes to it’s victims and their loved ones.
“It wasn’t easy to find a suitable project in the UK, but after much ‘googling’ I came across the Cure CJD Campaign (www.curecjd.org)
“When I read that there was a drug that had a proof of principle but further funding was needed, I strongly believed this was where we should focus our efforts.”
Nikki and her team of supporters have held a number of events over the past year, including a mammoth cycle ride from Kent, Andy’s home county, to Caistor.
Nikki added: “I have tried to convey to everyone we are asking for support from, that the money isn’t going into an abyss for which the results will never been seen, but is going directly to the progression of this drug for human trials so one day there might be a cure.
“Although some of my family feel extremely saddened that is too late for Andy, I am filled with a glimmer of hope that this drug will work and other families will have some hope, however small.
“I fully appreciate there is still a massive mountain to climb for this drug but I truly believe it is better to have some small hope than none at all.”