Dad embarks on seven marathons in aid of sight-saving research

Researchers at the University of Southampton are on the cusp of curing sight loss in children with albinism, a common side effect of the condition.

And one father whose young daughter has albinism is taking on a multi-marathon challenge to fundraise for the important research.

Joe Marsden’s 14-month-old daughter Raya already wears glasses for shortsightedness and to protect her eyes from the sun.

Joe is embarking on the challenge of seven marathons in seven days next month, raising money for the University of Southampton’s Gift of Sight appeal, which funds research into developing treatments for eye diseases.

Joe, who is 41 and lives in Liverpool, will run two marathons in Southampton, starting and finishing in Guildhall Square, on 1 and 2 September. He will then run marathons in Leicester, Birmingham, Leeds, Manchester and finally his hometown of Liverpool on Saturday 7 September.

He said: “I’ve run a marathon before, about 12 years ago, but this will be the first time I’ve run any on consecutive days. I’m nervous and I know it’s going to be a huge challenge, but I’ve got a brilliant trainer who’s been helping me get both physically and mentally ready.”

Joe is fundraising for Dr Helena Lee ’s pioneering research into albinism.

Dr Lee, Associate Professor in Ophthalmology at the University of Southampton and University Hospital Southampton, has discovered that a drug called Levodopa that is used to treat Parkinson’s Disease and movement disorders can potentially help to improve the sight of children with the condition.

The next stage for her study, called OLIVIA (the role of Oral Levodopa in improving Visual development in Infants and young children with Albinism), is to undertake clinical trials – but she needs funding to finance these trials.

Dr Lee said: “The work we have done to date is extremely promising. Severe visual impairment is common amongst those with albinism as they grow up. Our work has demonstrated that, if Levodopa is given from a young age, we can influence how the eyes grow and develop, and improve visual function.

“My aim is to run a small-scale trial with 10 children initially, followed by a much larger trial. Then, we would monitor the children as they grow up to determine the success of the treatment.

“If OLIVIA is successful, it will transform how we treat albinism in children. It will also set an important precedent for other paediatric eye diseases.”

On his daughter’s diagnosis of albinism when she was born, Joe said: “Raya’s albinism diagnosis was a complete surprise to us, as none of our other three children had been born with this condition. Diving into the world of albinism has really helped us understand the incredible work that is going on in research and the amazing people working behind the scenes to make a difference. My aim is to not only help Helena’s work to progress to clinical trials but to raise awareness about sight loss and albinism – and give children like Raya the best opportunities in life.”

He added: “The severity of Raya’s visual impairment and depth perception may not become fully apparent until she gets older. If Helena’s work comes through in time, there is a chance that she can have her vision improved. If not, we will equip her with all the love and support she needs and be proud that she will have helped children of the future.”

Visit Joe’s fundraising page to support his challenge.