News - ALD

Here are the latest news stories from Alex TLC and about topics we think you'll find useful.

Outcome of the Big Give Christmas Challenge 2021

January 2022

Huge THANK YOU to everyone who donated….we raised over £9000! For the Big Give Christmas Challenge 2021 we were raising money to write and illustrate a book designed to support children affected by adrenoleukodystrophy (ALD) and their siblings. Our primary goal of the book is to support children, build emotional resilience and encourage openness to talk and ask questions following the diagnosis of this rare condition.

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Childhood Cerebral Adrenoleukodystrophy (CCALD) Research Study

January 2022

To understand parents’ experiences of having a child diagnosed with CCALD Researchers from Sheffield Hallam University are conducting research in collaboration with Alex TLC to understand parents’ experiences of having a child diagnosed with Childhood Cerebral Adrenoleukodystrophy (CCALD). The study is a first of it’s kind and will help to provide evidence towards Newborn screening for ALD. It is a valuable study with the results providing a good opportunity to improve the circumstances for other families. The results will directly feed into initiatives to improve diagnosis and access to treatments for ALD patients.

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12 Days of Christmas – Day 11

December 2021

On our 11th Day of Christmas, we hear about Sam’s diagnosis of ALD earlier this year. Sam was diagnosed in March this year with  adrenoleukodystrophy (ALD). His condition has deteriorated rapidly since diagnosis, and he is now completely dependent.

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12 Days of Christmas – Day 9

December 2021

On our 9th Day of Christmas, our Support Services Manager, Karen Harrison, gives us an insight into her family’s Christmas. My identical twin sons, Cameron, and Alexander, were diagnosed with childhood onset cerebral adrenoleukodystrophy (ALD) in 2002, up until then we had just been a normal family enjoying life…

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12 Days of Christmas – Day 5

December 2021

On our 5th Day of Christmas, we remember a very special boy called Alex. Our Alex was diagnosed with adrenoleukodystrophy (ALD) just after Christmas 2001, when he was 7, and I think the doctors knew before but wanted us to have that last Christmas without the pain they knew was coming.

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12 Days of Christmas – Day 4

December 2021

On our 4th Day of Christmas, we remember a cheeky, lovable boy called Lewis. Lewis was one of a kind, cheeky but so lovable. He was diagnosed at a young age of around 3/4 with autism and ADHD.

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