Our battle against Duchenne muscular dystrophy is now 10 years old and we have been reflecting on that milestone throughout the year and some of our achievements over the past decade.  

In 2011, when Jack was first diagnosed, we were broken by a diagnosis that had robbed our son of his future. By forming Joining Jack in 2012, we hoped to claw some of that future back.

In 2016, after many collaborations including investing in research, lobbying to parliament, and discussing parental care for our sons, we joined forces with another powerful parent-led charity, the Duchenne Children’s Trust, to form Duchenne UK.

As Joining Jack and Duchenne UK, we have worked tirelessly to achieve so much more than we could have ever imagined. None of this could have been achieved without you. We are so grateful. 

Since 2012 we have attempted to change the landscape for Jack and ALL boys living with Duchenne. We have created four flagship fundraising events, involving more than 30,000 runners, riders, walkers, climbers, wheelchair users, pram pushers, friends, family, schools, community groups and even a deep sea diver!

Ten years ago, we were told gene therapy would not be ready in Jack’s lifetime. We disagreed. We were seed funders of Solid Biosciences, a start-up established to pursue this new technology, and boys are being dosed with gene therapy in this country now. 

We invested in Vamorolone – a drug that promised just that. The trials have been successful – we are now working with the company to help gain regulatory approval.  

We wanted more trials to come to the UK and more boys to have the chance to take part in new treatments. We conceived and funded the DMD Hub – a network of sites across the country
meaning more trials are happening than ever before. Ann achievement that seems all the more remarkable given that trials in the rest of the UK are falling.  

We were horrified to find there were potential treatments out there – but no-one willing to pay for them. We helped change the law to allow medicines to be approved more quickly – and formed Project HERCULES, a unique collaboration between patients, academics and drug companies to ensure more treatments get NHS funding.  

We learnt that patients with DMD were dying too young because they were not getting the right care. DMD Care UK is establishing best practice across all the disciplines – and fighting to ensure all medical professionals and parents know exactly what children and
adults with DMD need. 

And we saw technological advances ignore the needs of our children. We are investing in a Smart Suit and a Dream Chair to make sure the innovation that has inspired the smart phone and the electric car also delivers for the disabled community. 

We are 10 years old, but feel we are just beginning. Please stay with us in our fight to end Duchenne.