Supporting Duchenne UK
Evaris is proud to support Duchenne UK (Registered Charity No. 1147094).
Duchenne UK is a highly focused, ambitious and lean charity with a clear vision: to fund and accelerate treatments and a cure for Duchenne muscular dystrophy.
Duchenne Muscular Dystrophy is a devastating muscle wasting disease and is the most common genetic killer of children worldwide. There is no treatment or cure.
In the UK there are around 2,500 boys affected and around 300, 000 worldwide. Children will be totally paralysed by their teens and won’t live beyond their 20s. But thanks to recent breakthroughs, we believe we can save them.
We aim to eradicate it in 10 years: TO END DUCHENNE IN TEN.
In 2016 the parent led charity was formed by the coming together of Joining Jack and Duchenne Children’s Trust, the two biggest funders of research in the UK. The charity co-founders, Alex Johnson and Emily Crossley, met after their sons were diagnosed.
Duchenne UK is committed to continuing to drive momentum to deliver treatments to help this generation of those with Duchenne muscular dystrophy.
In 5 years we have spent and committed over £5.5 Million on funding clinical trials and research.
Tony’s story (Joey’s Father - a dad’s perspective)
I can still vividly remember the day we got told that our beautiful little boy has Duchenne Muscular Dystrophy. Like most of you we had never heard of this condition, let alone understood the implications of this diagnosis. We quickly had to get to grips with the fact that Joey had a progressive terminal muscle wasting condition.
Our race against time had begun.
Duchenne is 100% fatal, there is no cure. We were told by doctors that he will die with little or no muscle function in his late teens, maybe early twenties if we were lucky… My dream of Joey becoming a footballer amongst many other aspirations changed overnight into a simple dream of him being alive on his 21st birthday.
Joey is growing up and is a great, lively, cheeky little boy who enjoys doing what all little boys do including playing with his sisters Mia & Leora, being on his XBox and playing with his friends. He is a really happy boy and is doing well at school. However his muscles are constantly wasting away, in recent months he has got his first manual wheelchair and has started asking when the clever doctors will find the medicine for his poorly muscles.
Since Joey’s diagnosis we have received fantastic support from people near and far who have gone the extra mile time and time again to raise much needed funds. Trials are finally happening that may slow down or even halt Duchenne but now more than ever this remains a race against time.
Duchenne UK is a charity committed to finding a cure for DMD in this generation. They will only fund research that has a clear road map to market within the shortest time possible to find viable treatments and a cure for all 2,500 children with Duchenne in the UK alone. We have great international links and are constantly looking at worldwide research projects to fund.
Together we can change the future!
How is Duchenne caused?
DNA forms the genetic blueprint for nearly all life on the planet. Duchenne is caused by faults in the gene found on the X chromosome. This is why Duchenne almost exclusively affects boys.
The dystrophin gene is responsible for producing a protein called dystrophin in muscle cells that appears to act as an anchor to help to keep the cells walls intact. Due to its large size it is particularly prone to mutations. It is the break up and death of muscle cells through a lack of or poor functional dystrophin that causes the severe muscle wasting in Duchenne.
- Duchenne is the biggest genetic child killer in the UK.
- There is no treatment or cure for Duchenne.
- Duchenne is 100% fatal.
- There is only one outcome.
- However there is hope.
- An active treatment is within our reach.
- You support will make a difference to end DUCHENNE UK.