Aberdeen housebuilders will climb Mount Keen to raise research funds for a five-year-old with an incurable muscular disease.
The Dandara team will take on the mountain, which towers to more than 3,000ft.
This is to raise money for Charlie Anderson, who was diagnosed with Duchenne muscular dystroph, which causes gradual loss of muscle function, mobility and reduced life expectancy.
It is a progressive condition it and related illnesses affecting one in 70,000 people across the UK, with Duchenne being the most common.
About 100 boys are born with Duchenne MD each year, and there are about 2,500 people living with the condition in the UK at any one time.
‘Shine a spotlight on the disease’
Presently, there is no cure for this condition, but Charlie recently became the first boy in the UK to be recruited and dosed on the Embark gene therapy clinical trial by experts at Newcastle University.
The trial aims to add healthy new copies of the faulty gene that causes the condition, is to assess the efficacy of the gene therapy.
Researchers hope this method will gain approval as a treatment that will help others affected by the condition.
Claire Bathgate, head of sales for Dandara in Aberdeen, said: “Until one of my oldest and closest friends told me about her nephew’s diagnosis I, like many others, had never heard of Duchenne.
“Charlie and his family have shown such courage and determination to raise awareness of DMD and we are hoping to not only raise funds for the charity with our climb but to shine a spotlight on the disease.”
‘Little boy’s future snatched from him’
Charlie’s mother, Jennifer Anderson expressed her gratitude to the team at Dandara for their fundraising efforts.
She said: “We are so grateful to Dandara for their support – the kindness people have shown us since Charlie was diagnosed has meant such a lot and helps keep us strong.
“When we received Charlie’s diagnosis in January 2021, our world just imploded.”
Ms Bathgate stressed that the early days of his diagnosis were incredibly difficult, but the support of Duchenne UK have helped them to cope.
She said: “Those early days were very dark; our little boy’s future had been snatched from him by a cruel twist of genetics and the future looked bleak.
“However, Duchenne UK were and continue to be an incredible source of support and information.
The first boy in the UK to take part in Sarepta’s DMD gene therapy trial, Charlie, was chosen after his mum, Jennifer, entered his details on DMD Hub.
Read our news article: https://t.co/5sGygxu4RO
Sign up for the project: https://t.co/ETsS4ahfRe pic.twitter.com/mzxZUybVJy— Duchenne UK (@DuchenneUK) November 23, 2022
“It is thanks to Duchenne UK and the DMD Hub’s central recruitment pilot project to make clinical trials more accessible to all, that we were contacted by the trial site at the Newcastle Hospital and that Charlie has been given this incredible opportunity to take part in the trial.
“Only time will tell if the trial is successful, but we hope Charlie’s participation will not only be of benefit to him but will help advance science so that one day everyone living with Duchenne will have an infinitely different future.
“We have been very lucky that Charlie has received excellent care from the day of his diagnosis.
“However, due to the rarity and complexity of the disease, this can vary hugely across the country and so these standards are vital to ensure that all DMD patients receive the best possible care.”
Donations to Dandara’s fundraiser for Charlie can be made on JustGiving
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