Library
We have a library which holds an extensive range of information on Leukodystrophy.
We also have for members a selection of printed information packs which can be sent out on request and we also offer an information pamphlet, videos for loan and books of stories about people and families who have or are living with a Leukodystrophy illness.
Our library currently holds
- Scientific resource material – Journal of Child Neurology September 2003: ‘Leukodystrophies’ (4 copies)
- Centre for Childhood White Matter Disorders – Known & Unclassified White Matter Disorders (7 copies)
- Book of Stories – 3rd Edition: As It Is, Those Touched by Leukodystrophy and 4th Edition: Remembering, Those Touched by Leukodystrophy . Both books contain personal stories of families at the time of their diagnosis and beyond. They are inspirational stories of courage and love.
- There's No Such Thing As A Silly Question. A practical guide for families living with child with chronic illness, disability, mental illness or a life threatening condition. Published by Very Special Kids in partnership with the Gandel Charitable Trust. (6 copies)
- Siblings. A book written by Kate Strohm for brothers and sisters of children with special needs. Professor Graham Vimpani wrote "This book should be read by anyone coming into contact with a family that includes a child with a disability".
- Up to date editions of newsletters from:
- Very Special Kids
- Association for Children with a Disability and National Association for Children with a Disability
- Palliative Care Australia
- Self Help Queensland
- United Leukodystrophy Foundation
- Carers Victoria
- Association of Genetic Support of Australia
- Books relating to spirituality and coping with grief:
- Man’s Search for Meaning by Viktor E Frankl
- Something I’ve Never Felt Before (how teenagers cope with grief) by Doris Zagdanski
- The Dance of Anger (an exploration of women’s anger) by Harriet Goldhor Lerner PhD.
- DVD's & Videos
- ALDS Promotional DVD - Making A Difference
- Lorenzo's Oil (DVD)
- Sharing Our Story (Video produced by Association for Children with a Disability). Parents of children with a disability talk about their lives.
- The Carer (Video made in association with the Department of Human Services). Caring for someone suffering from Alzheimers Disease. Staring Charles "Bud" Tingwell.
- Depression In Men (I'm all right mate) (Video produced by Pfizer)
- Coming Out of the Wilderness (depression in women) (Video)
- What You Really Need to Know About Stress (Video)
To borrow an item , simply contact us and we’ll get it out to you (Australia & NZ only).