Duchenne UK aim to eradicate it in 10 years: TO END DUCHENNE IN TEN
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.
To make a donation, text ‘TACKLEDMD’ to 70085 to donate £10. This costs £10 plus a std rate msg. Alternatively, you can opt to give any whole amount up to £20.
Saracens have selected Duchenne UK as their charity partner for a period of two years commencing September 2019.
Alongside our ongoing commitment to Saracens Sport Foundation we will focus our efforts on raising awareness and fundraising to help find improved treatments and ultimately a cure for Duchenne Muscular Dystrophy. Duchenne UK and founding partner charity Joining Jack have a long standing relationship with Saracens.
Over the next two years, Saracens and Duchenne UK will work together on a number of fund and awareness raising activities including the Gallagher Premiership fixture against Harlequins at Tottenham Hotspur Stadium on Saturday 28th March 2020.
Duchenne UK and founding partner charity, Joining Jack has a long-standing relationship with Saracens. Owen Farrell has supported the charity personally through his relationship with co-founder and family friends, Andy and Alex Johnson and their son Jack, who has DMD.
Farrell’s iconic celebration sees him create the ‘JJ’ salute, hooking his forefingers to make the initials of Joining Jack – the charity set up by the Johnsons to raise funds for research into DMD.
Now merged to form Duchenne UK, the charity has raised over £15m since launching in 2012 and is making huge inroads to finding treatments, but Duchenne UK still needs support to find a cure and eradicate Duchenne in 10 years.
Alex Johnson and Emily Crossley have devoted their lives since their sons’ diagnoses to fighting this disease and have achieved a huge amount in a short space of time.
Despite being told gene therapy would never happen in their lifetimes, the first patient has been treated; they are investing in trials for re-purposing readily available drugs that may be a potential treatment for DMD, they have even managed to bring together seven leading pharmaceutical companies to try to speed up getting effective and innovative medicines to DMD patients.
Their motivation is self-explanatory: “And we do this, all day, every day, all the time that our sons, our precious sons, are battling every day to live the best possible life in spite of this horrifically cruel disease.”