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DebRA fundraiser’s 2,000 mile Harley Davidson marathon to raise £20,000 for charity

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DebRA fundraiser and avid Harley Davidson motorbike enthusiast Ross Jamieson and nine members of the Dunedin HOG (Harley Owners Group) are completing a 2,000 mile road trip around Britain and Ireland on Harley Davidson motorbikes to raise £20,000 for the national charity DebRA.

The charitable bikers stopped off en route at DebRA’s UK head office on Tuesday 17th June to the sound of Scottish pipes and were greeted by staff at the Crowthorne based charity.

DebRA supports families affected by Epidermolysis Bullosa (EB) - a rare genetic condition which causes the skin to blister and shear at the slightest friction, or even spontaneously. There are at least 5,000 people living with this devastating condition in the UK and 500,000 worldwide.

Some of the Harley Davidson bikers pictured with Dawn Jarvis, Head of Fundraising and Research Administration at DebRA45 year-old Ross and his fellow HOG enthusiasts from the Dunedin chapter in Edinburghset off from Edinburgh on Friday 13th June and are taking 8 days to visit every single Harley Chapter and dealership in the UK and Ireland. The group will also collect Chapter pins from the various Chapter across the country which will later be auctioned as a “Collectors Set” to add to the funds raised.

Ross’ wife Alyson, 42, and 16 year-old twin daughters, Heather and Sarah, all have Epidermolysis Bullosa Simplex (EBS). Alyson said: “Fortunately we all have the simplex version of EB, which is the mildest. But shoes cause our feet to blister and any clothing that rubs against our skin will also leave blisters that need to be surgically burst and dressed.”

Those with the more severe dystrophic form of EB have skin so fragile that the lining of the mouth is affected, making it almost impossible to eat.

Ross of Linlithgow, West Lothian, said: “Heather and Sarah have tried not to let it curtail their childhood, although it has prevented them from doing certain things, like sports. The twins have to be careful breaking in new shoes and ensure seams and labels on their clothes don’t rub. But most of the time they just grin and bear it.”

Dawn Jarvis, Head of Fundraising & Research Administration at DebRA, added: ““We’re so grateful to Ross, his family and members of the Dunedin HOG for organising and taking part in this wonderful fundraising trip for DebRA. DebRA relies on the generosity of the public and fundraising initiatives like this to carry out its vital work, funding research and in providing specialist support services such as travelling nurses, clinics and equipment for families under severe pressure. In addition to hopefully raising £20,000 for DebRA, the riders are also increasing EB awareness en route which is fantastic and we wish them every success with the remaining leg of the tour.

To sponsor Ross and help him reach his £20,000 fundraising target for DebRA, please visit www.dunedinfordebra.co.ukFor more information about DebRA and to view a short video clip showing the reality of living with EB please visit www.debra.org.uk.

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