Story
2023 was brilliant, the support given invigorating! But let’s make 2024 even bigger and better…I have faith!
For ‘24 we’ve tried to mix it up a bit. There are 4 marathons - Paris, Leeds (Rob Burrow one!), Amsterdam and Abu Dhabi - a skydive, a bungee jump, world’s longest zipline and also the Great North Run. That should be enough to keep us all going!
https://www.ataxia.org.uk/about-ataxia-uk/
Ataxia is a name given to a group of neurological conditions affecting the cerebellum, the part of the brain controlling the central nervous system, the most common one being Freidreich's Ataxia. It is a degenerative condition with no cure.
Ataxia is not that well-known, but friends of mine recently had their two teenage children diagnosed with Friedreich's, so the challenge is a personal one.
Ataxia U.K. has been a tremendous support for them, but they need more funding and publicity. My friends have kindly put together some poignant yet inspiring words on their personal situation and are comfortable with me sharing:
Our teenage children received a diagnosis of Friedreich's Ataxia in Nov 2022. It's a rare genetic degenerative neurological condition: An incurable muscle wasting disease often diagnosed in teens. 15 & 14 years old: what were you negotiating at that age? Sneaking fags, drinking booze & lusting over unobtainable sexual conquests. But now, as a family we are discussing mobility, MRI's & a multitude of symptoms when we should be arguing about mobiles, make-up & marijuana.To be furnished will all your faculties & all the potential of hopes and dreams for the future just to have them curtailed in your mid-teens is beyond cruel. We could be angry & we could dissolve into despair but that's just not how we roll. Medical staff, as wonderful as they are, don't offer much hope. But there is! There are still dreams to be achieved, there's still mischief and wonder and there's all of you out there that nuzzle us along & keep us laughing. For life is what you make it & for our children, we've got to seize the moment & make memories now. Right now, your Goodwill will cement these memories & enrich their lives. Your goodwill and love is what they need!
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