Mum raises £250,000 for world's first clinical trial into blinding disease (From News Shopper)

Mum raises £250,000 for world's first clinical trial into blinding disease

10:29am Tuesday 24th January 2012 in Health News By Abigail Woodcock

A MOTHER whose son suffers from a degenerative eye disorder has raised £250,000, sparking the world’s first clinical trial into a cure.

Emma Salisbury of Yorkland Avenue, Welling, started raising the funds seven years ago when her son, Tommy, was diagnosed with choroideremia at the age of four.

Choroideremia is a rare inherited eye condition that causes a progressive loss of vision, and ultimately blindness, in men.

It means Tommy, now 11, has trouble with his peripheral vision and seeing in dark places.

Mrs Salisbury, who also has two other children with husband Paul, said: “Tommy’s vision will continue to get worse and it means he will probably go completely blind at the age of 40.

“We were devastated when we found out.

“My grandfather was registered blind at 38 with the disorder, so we knew there was a chance I could pass it on, but you always hope you’ll be lucky.”

The 40-year-old added: “We’ve had some sad conversations with Tommy.

“He gets scared, nervous and not quite sure what the future will hold.

“But I say to him, ‘This is who you are and we will deal with it together. Let’s try and do everything you can now.’

“There are children who are so much less fortunate than him.”

Shortly after her son was diagnosed, Mrs Salisbury heard research was being carried out by Imperial College London into a cure for the disease.

Setting up the Tommy Salisbury Choroideremia Fund through national charity Fight for Sight, she organised a series of fundraising events to raise money for the research.

As well as dontations from the public, Mrs Salisbury raised the £250,000 by organising sponsored golf days, marathons, bike rides and coffee mornings.

As a result, researchers were able to use the money to fund the world’s first clinical trial into the blinding disease last October.

If the trial is successful, Tommy could be treated within the next three years.

Mrs Salisbury, who works for a private equity firm, said: “It is the most fantastic news.

“It’s what we have been waiting for since 2005.

“But even though it is being done, it is still not ready for Tommy.

“Until they phone me and say it is, I will not be giving up.

“I’ll still be raising awareness and money for research into the condition.”

For more information, go to fightforsight.org.uk

The trial

PROFESSOR Robert MacLaren is heading up the clinical trial in Oxford.

It builds on gene therapy research performed in collaboration with Professor Miguel Seabra at Imperial College London.

Professor MacLaren said: “This clinical trial marks a major step in developing gene therapy treatments for photoreceptor diseases.

“It would not have been possible however without the scientific funding provided by Fight for Sight through the Tommy Salisbury Choroideremia Fund over the last five years.

“In my opinion, this is the single most significant factor that has enabled our British team of researchers to lead the world in starting the first clinical trial for this disease.

“We should not under-estimate the power that individuals can have in influencing the course of research through their fundraising activities."