About to run seven marathons in seven days, a Liverpool father is helping raise vital funds for the paediatric albinism and blindness research at the University of Southampton.
Because of his one-year-old daughter Raya’s rare genetic disorder, albinism, which can seriously impair vision, Joe Marsden is facing the demanding running challenge.
Raya was born in July 2023. To Joe and partner Sophie’s surprise, Raya was born with white hair, however, they soon became concerned when they noticed Raya’s eyes moving differently from other children’s. Raya’s diagnosis of a rare form of albinism, which affects her sight and motor skills and prevents her from sunlight exposure, came the following month.
One in 17,000 people are born in the UK with albinism. Tragically, this leads to the diagnosis of visually impaired children with albinism. This results in lifelong moderate/severe visual impairments for which there is currently no cure. While researching, Joe and his partner came across Dr. Helena Lee and her incredible work at the University of Southampton.
Her and her team of scientists, including ‘genius’ Dr. Jay Self, have been working hard to find a treatment for albinism, which would help save sight for thousands of children in the UK. She is excitingly close to finding a cure but needs more funding to complete her research. Joe has taken it upon himself to raise £25,000 for Gift Of Sight, the charity supporting the research at the university.
Joe said:
“I was so impressed with Helena and her determination to find a treatment, and so saddened by the thought of children like Raya having visual impairments, that I needed to do something to help. There are seven types of albinism, which got me thinking…what if I could run seven marathons in seven days across seven cities of the UK whilst raising awareness and funds for this vital research?”
“We’re off to a really good start and have raised almost £10,000 already. I have some really good sponsors in The Fun Factor, Prime Contracts Ltd, ML Associates, Brick By Brick Coaching, Win Win Water, AME Physio, GL Telecoms, Tram Productions and Albinism Fellowship. If we can hit our £25,000 target it would make a real difference to the vital research.”
On 1st September 2024, Joe will be running seven marathons in seven days, starting in Southampton and completing them in London, Leicester, Birmingham, Leeds and Manchester, before culminating in a final marathon in Liverpool. Joe has been training extremely hard for the gruelling challenge, coached by long distance runner Leon Bustin, triathlon coach Trevor Jones and physio Andy Ellis from AME Physio.
The 41-year-old father of four summarised:
“I have always believed that if you put your mind to it, you can achieve anything. And with the right training and power of positive thinking, I am determined to achieve this challenge – and make a difference to children like Raya. It will take a monumental effort and my final marathon in my hometown of Liverpool will no doubt be an emotional finish.”
You can donate to the cause here.
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