<div><strong>Myself and a handful of dedicated heroes will be completing a team Ironman challenge on the 22nd August 2026. This comprises of 112miles on a bike, 26.2miles running and 2.4mile swim. All of this needs to be completed within 17hrs if 1 person is doing this, as we are completing this as a team we are aiming to complete this in 6hrs.</strong>
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<div>Those of you who have followed this page and our story for the past 3 years will know that we started this page to raise the money for a clinical study and we climbed Mount Snowdon to do this. With all your help the study was conducted and we are forever grateful to all who donated and to all who helped share this page to get us to this point.
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<div>We are now planning this new adventure to raise money for a Clinical-trial Viral Vector at UCL (University College London). This is a critical step towards launching a gene therapy clinical trial in humans.
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<div>For every donation, if you could please tick the gift aid button so that an additional 25 pence per pound will be donated at NO EXTRA expense to you, this would be greatly appreciated. Many thanks to you all!
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<div>We have a beautiful daughter Sky, 10, who was diagnosed with NBIA when she was only 7 years old. NBIA (Neurodegenerative Brain Iron Accumulation Disorder) is probably a new group of words to most reading this, they was for us when we heard them. This genetic condition causes spasticity and dystonia as the most noticeable early symptoms.
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<div>The condition causes the iron in Sky's body to not be used correctly and instead gets stored in an area of her brain called the Basel Ganglia. This is the area of the brain that controls motor functions (which is why her walking and balance are noticeably different to her peers). This is currently an untreatable condition and is a life limiting genetic disorder. INAD patients rarely make it past Sky's age and ANAD (which Sky falls into) do not typically make adulthood.
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<div>We agreed for Sky to take part in a clinical study researching this condition as this is a super rare disorder affecting only 1 in every 1million people. Although this charity is called CureINAD UK, they are planning to treat children with ANAD too. It is our hope that this gene therapy they are working on may save our little girl before it is too late.
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Nick Cowell

Andrew Davies

Krystyna Sajdak

Lucy Nattrass

Budgens southwater Stephanie Cullinane

Stephanie - Budgens southwater Cullinane

Geoff Parker

Rich Morris

Danny Barton

David Cullinane

Budgens charity pot Southwater

Vicky Smith

Chelsea Andrews

Terry O'Donoghue

Anonymous

Rich Insley

Please help us help CureINAD UK who's work has given us hope

Please help us help CureINAD UK who's work has given us hope

Still £39,073 to go. Help us build momentum.