Cure INAD UK are trying to save NBIA patients

My wife Stephanie and I are going to be Joined by my Brother Chris, Stephs sister-in-law Lisa, Tarek (a friend of the family), Lori (Stephs Niece) & Alfie, some bloke we cant get rid of when we travel to Wales in August to 'Climb' Mount Snowdon which is the highest mountain in Wales and the highest point in the British Isles, outside of Scotland at least. This adventure should take around 6-8 hours but with Stephs little legs she may need the weekend...

Would you please join me in making a difference? I'm raising money in aid of Cure INAD UK and every donation will help. Thank you in advance for your time taken to read this and if you could share it as far as you can that would be as good as a contribution and we would be forever grateful. Those that can afford to contribute (and we appreciate that may not be many in this current climate) would also find us eternally grateful.

If you are able to donate then please tick the gift aid button if possible so that an additional 25p per pound will be donated at NO EXTRA expense to you, many thanks to you all!

We have a beautiful daughter Sky, 8, who was diagnosed with NBIA just last year. NBIA (Neurodegenerative Brain Iron Accumulation Disorder) is probably a new group of words to most reading this, it was for us and causes spasticity and dystonia as the most noticable symptoms. The Iron accumulation in Sky's brain has taken place over her Basel Ganglia which affects her motor functions (her walking and balance are the worst of it for her currently but we are just happy she still walks at this time, as most at her age are not). This is currently an untreatable condition and is a life limiting genetic disorder.

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 million people. There are 3 variants to this condition which although they all manifest at different ages and different rates, they all have the same end result and are all untreatable currently. Sky falls under the ANAD umbrella which is, in our opinion, a marginal mercy in comparison to the INAD patients who are affected at an earlier age and inevitably their journeys also end sooner with most not seeing adulthood. Although this charity is focusing on INAD patients, it is our hope that if this is successful then ANAD patients may also be treatable in the very near future to save our little girl.