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Arctic Circle cycle challenge

437. Rod Wark
436. Duncan Brownnutt

Two men from Leeds have raised £13,000 for the Batten Disease Family Association (BDFA) through an Arctic Circle tandem bike challenge.

Duncan Brownnutt, 40, and Rod Wark, 56, have been fundraising for the association for two years. Both of Duncan’s children have suffered from Batten’s disease, which has no known cure. His daughter passed away from the disease at the age of six and his son is still fighting it.

As well as funding research, the charity also supports families with children affected by Late Infantile Batten Disease, which is a rare degenerative illness that starts at the age of three and sees children lose their mobility, speech and eyesight.

The children were both diagnosed with the disease days before Christmas in 2013 and Duncan has been working ever since to raise funds to research the disease. Duncan recruited his friend Rod in January and planned a 500-mile trip on a tandem bike to the arctic circle for May- just three months after the death of his daughter.

The pair posted updates via a ‘cycle to the circle’ blog and Facebook group during the ride, with the BDFA mascot Boris the Bear. They cycled from Roros, Norway, where the first case of Batten’s Disease was reported and finished their epic journey in five days.

Prime Minister David Cameron said:

“With their remarkable cycling challenge, Duncan and Rod have raised a fantastic amount of money to fund research and support for Batten Disease. I know this is a cause very close to their hearts, and I am delighted to be able to recognise their fundraising by making them Points of Light.”

Duncan said:

“I was stunned to get a call from the Prime Minister’s office, and it’s a thrill to be recognised for doing something which we enjoyed so much! Hopefully this award will bring more awareness of batten disease and the great work being done by the BDFA”

Rod said:

“Having the opportunity to raise the profile of a charity (BDFA) who do such a great job supporting families who have children with Batten Disease has been a humbling experience. My hope and prayer is that our sponsored cycle to the Norwegian Arctic Circle will in some small way improve the prospects of a future cure for this terminal condition. To receive recognition from the Prime Minister for what Duncan and I achieved has been a complete and overwhelming surprise. Thank you to everyone who supported us along the way.”

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