I am going to spend 5 weeks doing 5k, 5 times a week in 5 different ways! This will be done by walking, running, skating, mountain biking and kayaking.

I am aiming to raise as much as possible for the Battens Disease Family Association to support families impacted by this tragic and degenerative disease.

Hayley and Dave Clarke are friends of a work colleague and they have a beautiful daughter Addy. Addy has been diagnosed with Battens disease and it has become very apparent quickly the BDFA needs as many funds as possible in order to pay for a trial to maintain children's eyesight. The aim is to provide treatment to the handful of impacted families in the UK.

Many are unaware of the BDFA and the key support it gives to families impacted by Battens but also little awareness due to the rareness of the disease.

Battens disease is a group of rare, progressive neurodegenerative, genetic metabolic diseases that occur in children & adults worldwide. The BDFA's Vision is to be the central point of excellence in the UK for supporting affected families funding research into a potential cure.

Funding is critical for this charity and one of the key needs right now is below:

"We are looking to raise funds towards a potential compassionate use programme using Brineura ©, an enzyme replacement therapy, to help maintain eyesight in children with CLN2. Currently, this potential programme would only be for children who are already accessing Brineura © but offers potential hope to children diagnosed in the future."

Like all medical trials, treatment or support funding is needed crucially and we aim to raise as many funds as possible for this brilliant organisation. Please support us.

See the BBC news story here:

https://www.facebook.com/110342004168247/videos/1812653378887608

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