Help shape a vital children’s support resource on Leukodystrophy

Be Part of our Children’s Book for ALD Steering Group


We are creating a children’s book 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.


We have created a draft version of the book and we need your feedback. Would you like to be part of the steering group?


What does it involve?

– You will be sent the draft version of the book and we’d like you to give your feedback and thoughts

– We may contact you asking your opinion about certain aspects of the book; both written material and illustrations

– Once amendments are made to the draft version of the book, we will send through the amended version to get your feedback again


Who can be part of the steering group?

– Anyone affected by or supporting someone affected by a Leukodystrophy is welcome to be part of the steering group

– Parents who have a child/children affected by a Leukodystrophy (we are hoping to produce future books on other types of Leukodystrophy and topics)

– Siblings of an affected child (children and adults)


If you have any questions, or would like any further information, please contact

Alex - The Leukodystrophy Charity