Here are the latest news stories from Alex TLC and about topics we think you'll find useful.
A free resource for our community Our Children’s Book is a tool to be utilised by families following a diagnosis of Childhood Cerebral Adrenoleukodystrophy (CCALD), which parents can use in family discussions. It is to support children, to build emotional resilience and openness to talk and ask questions following the diagnosis.
Receives royal endorsement in response to written letter One of our fantastic community members, Michael Conway, has received a letter of support from William and Kate. He continues to raise awareness of ALD by sharing his story widely. To read the article: Greenock Telegraph Article
To support siblings and families of children diagnosed with Childhood Cerebral Adrenoleukodystrophy (CCALD) Our Children’s Book is a tool to be utilised by families following a diagnosis of Childhood Cerebral Adrenoleukodystrophy (CCALD), which parents can use in family discussions. It is to support children, to build emotional resilience and openness to talk and ask questions following the diagnosis.
Find out about our campaign to get ALD added to the newborn screening programme in the UK Wednesday 28th June is International Neonatal Screening Day. This day highlights the vital need to screen for conditions at birth, including leukodystrophy. We continue to campaign to get ALD added to the newborn screening programme in the UK. To find out more, visit our campaign page: Screen Our Boys
To support children affected and their siblings Our children’s book to support the siblings of children diagnosed with childhood cerebral adrenoleukodystrophy (CCALD) is available to order for free.
To discuss stem cell transplant and gene therapy Sara, Our CEO, will be talking to MPs about the issues and opportunities related to cell and gene therapies during a Genetic Alliance Parliamentary drop in event today, including the importance of ensuring leukodystrophy patients have timely access to these life-saving treatments
