The Duchenne Dash started 7 years ago, when our patron Krishnan Guru-Murthy and a group of friends cycled to Paris. It has now become our biggest annual fundraiser.
Duchenne research has also moved on significantly over these past 7 years. And Duchenne UK has been at the forefront of this movement.
I am absolutely thrilled to say that we have someone very special joining us on the Dash this year – my dearest friend and fellow co-founder and co-CEO of Duchenne UK, the remarkable and extraordinary, Alex Johnson.
She’s cycling the Dash with her husband Andy and many amazing Duchenne mums and dads.
Here's a message from Alex, explaining why she's taking part in the Dash:
"Every day I watch my little boy Jack and those who live with Duchenne Muscular Dystrophy lose abilities I take for granted. They’re the simple things, like being able to walk, open a book, flick a light switch or just being able to breath independently. And it kills me inside.
I am determined to make a difference in the fight against Duchenne. Time is running out. Duchenne is a progressive disease and my clock is ticking faster than that of researchers, clinicians, pharmaceutical companies and regulators. I need you to help us make the most of every minute and help accelerate the search for treatments.
We are developing a pipeline of drugs to treat Duchenne. We now need to accelerate them to make sure they are here quickly enough to help this generation of people living with this devastating condition.
Since Emily and I set up our foundations in 2012, we have together spent and committed more than £10 million on research, making Duchenne UK the biggest funder of Duchenne research in the UK over the last 7 years.
We’re funding clinical trials and translational research that will become trials soon. We are also funding the doctors and research nurses who are running these trials. And we have set up an award winning project to ensure that once treatments are available, all patients can get quick access to them.
Very few charities can claim to have achieved so much, with such low overheads, or to have addressed many of the challenges that exist in drug development with tangible, ground breaking and innovative initiatives that truly are delivering results.
The money you raise REALLY IS MAKING A DIFFERENCE.
I am terrified – and excited - in equal measure - by the prospect of cycling 300km in 24 hours for the Duchenne Dash. But I am determined to finish along with an inspiring group of Duchenne mums I am training with.
As my little mantra goes Jack's got the heart I've got the legs.
The more money we raise, the more research we can fund, and the quicker we will get more treatments.
Now more than ever we need your help to raise money to keep funding promising research.
Thank you for joining me on the Duchenne Dash 2019
Now let’s raise £1MILLION!"
THANK YOU FOR YOUR SUPPORT
Duchenne Muscular Dystrophy is the most common fatal genetic disease diagnosed in childhood. Children born with DMD cannot produce the protein dystrophin which is vital for muscle strength and function. Muscle weakness starts in early childhood. Many use a wheelchair by around the age of 12. As deterioration continues it leads to paralysis and early death, often in their 20s. It almost exclusively affects boys. There is no treatment or cure. In the UK there are around 2,500 boys affected and around 300, 000 worldwide. It is classified as a rare disease.
Duchenne UK is a lean, ambitious and highly focused charity with a clear vision: to fund and accelerate treatments and a cure for Duchenne muscular dystrophy. The charity has been formed by the coming together of Joining Jack and Duchenne Children's Trust, the two biggest funders of research in the UK in the last three years. Its president is HRH The Duchess of Cornwall. Its patrons include the broadcasters Krishnan Guru-Murthy and Mary Nightingale, and the sports stars Owen Farrell, Kris Radlinski and Andy Farrell.
For more information visit www.duchenneuk.org