Yesterday we hosted our charity webinar to raise awareness of a very little-known disease called Duchenne Muscular Dystrophy (DMD) which currently has no cure.

DMD is a progressive condition diagnosed in childhood which causes all the muscles in the body to gradually weaken, including the heart and lungs. DMD almost always affects boys and is typically diagnosed in childhood between the age of three and six.

We also wanted to show our support for an incredible young man called Ben and share his story living with this condition to highlight how it affects him, and his family, every day.

We were very pleased and grateful to be joined by Ben’s Dad, Alex Clarke, who spoke openly and emotionally about the effects of this condition on Ben and his family, and what we can all do to help their cause, and other boys like Ben.

The family have partnered with Duchenne UK, creating the 'Ben versus Duchenne Family Fund' to support research, specifically funding projects like Elevex (an assistive technology for upper limb mobility) and DMD Care UK which aims to standardise care nationwide.

We were also joined by Freddie van Mierlo, MP for Henley & Thame, who spoke about the work he is doing in Parliament to raise awareness of this disease and for changes that are required in the health system to provide consistent treatment across the UK and access to a drug called Givinostat, which is not yet available through the Oxford University Hospitals (OUH) Trust, which is where Ben lives.

If you couldn’t attend in person, you can watch the webinar recording here. 

How you can help

Our call to action is to ask for your help in four key areas:

1. Raise awareness by sharing Ben's story, video, and our fundraising page with your friends & family.
2. Donate here - Ben vs Duchenne - help us raise £5,000 for Ben’s family fund which allows the family to decide how the money is invested.
3. Provide a special experience for Ben – can you, or anyone you know, provide a special experience for Ben, either in relation to Formula 1 or jet aircraft? Please let us know if you can.
4. Join our charity walk on Friday 11th September – to help raise awareness for Ben and Duchenne, the Fox Payne team will be walking along the Thames from our office in Caversham to Henley. Anyone is welcome to join us, so please let us know if you’d like to come along and we’ll provide you with more information.