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Why we Race the Sun: Lily's story

Our three-activity team challenge, Race the Sun - Lake District, supports the invaluable work of the children's charity Action Medical Research, who are forever committed to developing effective treatments and cures for devastating illnesses that threaten and hinder children's lives. One of the charity's latest priorities involves helping save children like Lily, who suffer from BPAN. Below, we tell Lily's story.

Lily is a happy-go-lucky little girl, who loves swimming and singing. Such innocent, happy moments mean the world to parents, Simon and Samantha, because Lily has a devastating, life-shortening condition known as beta-propeller protein-associated neurodegeneration or BPAN.

Tragically, Simon and Samantha know that in the coming years, Lily’s health will continue to deteriorate as teenagers and young people with BPAN develop abnormal muscle tone, along with symptoms of Parkinson’s disease and dementia.

Currently, there is no cure for BPAN. But one day there could be.

Lily has taken part in a study funded by Action Medical Research to help children with BPAN that hopes to one day find a cure for this devastating disease. The research looks into possible new treatments to correct the BPAN cell malfunction and to stop - or even reverse - the deterioration it causes.

Here comes the 'but'...

As with all medical research, coming up with new, effective treatments and a cure is a long process. Much longer, unfortunately, than the time it takes for the BPAN cell to deteriorate children’s lives. Action Medical Research need our help to fund their work so that they can find a cure more quickly.

Simon, Lily’s dad, says: “Medical research like this for children is just absolutely vital – you have to start somewhere. We know we won’t get a cure for Lily, but other children might benefit. Lily has so much to give, much more than she will ever realise. We are so proud her.”


Help save children like Lily by racing the sun in 2018.

Race The Sun with three friends, canoeing, cycling and trekking from dawn till dusk in support of Action Medical Research across the Lake District.

Testing spirit, strength and stamina, this amazing adventure gets you up from your sofa and onto your feet, bikes and boats across one of the most beautiful parts of the UK.

Not only will you help save children like Lily, but you’ll also conquer a momentous challenge as a team.

learn more about Race the Sun - Lake District

More about Action Medical Research

Action Medical Research fund the very best research most likely to make a difference to the lives of sick babies, children and young people. This amazing charity has played a significant role in many medical breakthroughs for 65 years, starting with the development of the first UK polio vaccine.

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