In 2024 myself, Ben, Mark and Bruce completed a London to Paris cycle ride. We covered around 300 miles over the space of 4 days and managed to raise over £5,000 for Duchenne UK. This year I am giving them a well deserved rest and will be joining the London to Paris Duchenne Dash. It’s a cycle ride which covers 180 miles in 24 hours organised by Duchenne UK!

Many of you will be familiar with our motivations for raising funds for this incredible charity. But, for those of you who don’t, we are doing it for our 9-year son Oscar who was diagnosed with Duchenne Muscular Dystrophy (DMD) in December 2022.

DMD is a rare genetic degenerative neuromuscular condition. It is diagnosed in early childhood and has no cure. The only treatment is chronic steroid use which comes with significant side effects and doesn’t address the root cause of the condition.

Duchenne UK has one key aim, to ‘End Duchenne’. Founded by two very driven mums of boys with the disease Duchenne UK is the leading DMD charity in the UK.

The work of Duchenne UK provides hope in the form of support for families, help and guidance, but perhaps fundamentally by seeking treatments and ultimately a cure to this devastating condition. The charity actively engages with drug companies, approval bodies, funds research spaces and lobbies politicians and government to raise the awareness of the condition and the urgent unmet need for treatments.

Duchenne UK fund the DMD Hub to bring more UK patients the opportunity to take part in clinical research, and are working to improve DMD care throughout the UK by providing clinical recommendations to health services.

Progress is being made in the fight against this devastating disease thanks in a large part to the work of Duchenne UK which is supported by the kindness and generosity of individuals. This gives us real hope for the future. Progress includes over £27m invested in DMD research, support and care, 34 clinical trial staff funded at sites across the UK, 500 + boys taking part in clinical trials for innovative DMD treatments, 650+ families received the Family Folder guide to help them cope with a DMD diagnosis.

One day the aim to ‘End Duchenne’ will hopefully become a reality. With your help and donations we can help make this happen. So, please consider donating to this cause. It makes a massive difference to us and the Duchenne Community.

Thank you for all your help and support.

Ian, Lucy and Oscar xx

P.S We are not letting the disease take over and rule our world. Oscar is still a happy, bright, sociable, inquisitive and very mobile little boy. He loves exploring, wants to be a steam train driver and asks plenty of questions about everything!