Consortium cure hope for little Owain
5:37pm Thursday 24th July 2008
THE scientist father of a Ledbury toddler with a rare genetic condition is attempting to find a cure for his son, by putting together a consortium of drugs companies to fund vital research.
In a story with echoes of the true-life movie Lorenzo’s Oil, molecular geneticist Richard Price is determined to use his expertise, contacts and determination to help his three-year-old son Owain, who has Duchenne muscular dystrophy.
Mr Price said of his bid to found a consortium: “We are 25 per cent on the way. By the next financial year, April 2009, a few companies could be working together.
“It is good for companies to put something back, other than just selling products.”
He added: “We are determined to find a cure, and not just for Owain.
“Ultimately gene therapy is the way forward, if they want to cure it.”
The Price family and their friends have raised more than £7,000 in little over one year, towards cutting-edge research that could lead to the major medical breakthrough.
But a consortium could bring in the big money that researchers need.
Mr Price said: “This would be at a multi-national level and we could be talking about tens of thousands of pounds.”
Government funding has traditionally been low and the national Action Duchenne pressure group is currently attempting to raise £2m, - while calling for match funding from Parliament.
The serious muscle-wasting condition that affects Owain leaves many youngsters wheelchair-bound by the time they are teenagers.
The faulty gene responsible, the largest in the human genome, was only identified in 1987.
People with the complaint rarely live beyond their twenties and conventional steroid-based treatment has risks.
Owain will be four-and-a-half and eligible to start steroid treatment in the spring at Birmingham’s Heartland’s Hospital.
But Mr Price said: “There was a recent death of a child in Wales who had Owain’s condition and was on steroids.
“We are still hoping that other avenues could open up for us.”
One gene therapy trial is currently underway, involving older children.
Mr Price, of Leadon Close, said: “The results are expected next year, and then there will be some indication as to whether the treatment has worked.”
The Prices are determined that Owain will be included on the next gene therapy trial, whenever that takes place.