Resources
We have an extensive range of books, articles, stories, newsletters and other sources of information on leukodystrophy available for loan.
For ALDS members, there is a selection of printed information packs which can be mailed on request. We also offer an information pamphlet, videos for loan, and books of stories about people and families who have, or are living with someone who has, a leukodystrophy illness.
ALDS Newsletter
The ALDS also produces and distributes a newsletter to its members four times per year. Please view the ALDS Newsletters.
Family Information Kit
Our Family Information Kit is a great resource for families with a recent diagnosis to help guide them through the difficult task of understanding leukodystrophy and the unique terminology associated with it. The kit also offers guidance on the help available through government and support agencies. Order our Family Information Kit here.
Publications
Therapy Focus is a WA based resource service with free downloadable tip sheets containing useful and easy to read information, advice and solutions to common issues such as inclusion, social skills, language, literacy and physical activity – http://www.therapyfocus.org.au/resources.aspx
HEALTH ISSUES (Journal of the Health Issues Centre): Issue No. 106 Autumn 2011 – Chronic Disease Management and Peer Support Programs. The cartoon that accompanies this article was prepared and included without consultation with the authors. The ALDS acknowledges the cartoon does not properly represent the nature of the article. Please right click on the link and select ‘Open In New Tab’. Family Advocate article
The ‘Book of Stories’ are personal stories of families at the time of their diagnosis and beyond, inspirational stories of courage and love.
Book of Stories, 1st Edition (1994): Stories of Parents and Their Children
Book of Stories, 2nd Edition (1997): Stories of Leukodystrophy Sufferers
Book of Stories, 3rd Edition (2001): As It Is, Those Touched by Leukodystrophy
Book of Stories, 4th Edition (2007): Remembering, Those Touched by Leukodystrophy Leukodystrophy
Journal of Child Neurology (September 2003): ‘Leukodystrophies’ – scientific resource material (4 copies).
Centre for Childhood White Matter Disorders: ‘Known & Unclassified White Matter Disorders’ – scientific resource material (7 copies).
There’s No Such Thing as a Silly Question – a practical guide for families living with a child with a chronic illness, disability, mental illness or 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
Man’s Search for Meaning by Viktor E Frankl. This is among the most influential works of psychiatric literature since Freud. Review on Amazon
How Teenagers Cope with Grief: Something I’ve Never Felt Before by Doris Zagdanski. Death, loss and grief are openly discussed in this book for young people. A well respected book written to alleviate the pain and loneliness associated with living without. Review on Amazon
The Dance of Anger by Harriet Goldhor Lerner. Dr Lerner teaches women to identify the true sources of our anger and to use anger as a powerful vehicle for creating lasting change. Review on Amazon
DVDs and videos
Making a Difference (2008, DVD). ALDS promotional DVD. View on our YouTube channel
Lorenzo’s Oil (1992, DVD), directed by George Miller. Based on the true story of Augusto and Michaela Odone, two parents in a relentless search for a cure for their son Lorenzo’s adrenoleukodystrophy (ALD). The film was nominated for two Academy Awards. View trailer
Sharing Our Story (2002, video), produced by the Association for Children with a Disability. This video explores the lives of five families of children with disability from Victoria. It provides a unique, real-life insight into the lives of families, including the difficulties and the joys.
The Carer (2000, video), made in association with the Department of Human Services and starring Charles ‘Bud’ Tingwell. George Parker retired early to care for his wife, who was suffering from Alzheimer’s disease. She has passed on and he faces the future … what will it hold? George’s story is touching, funny and true.
Depression In Men (I’m all right mate) (video), a patient information video presented by Roerig (a division of Pfizer) and Pfizer Pty Ltd. If you are a man suffering from depression, or close to someone who is, then this video will help you understand what the condition is all about.
Coming Out of the Wilderness (video), a patient information video about depression in women presented by Pfizer Pty Ltd. Depression is not something that we easily acknowledge or understand. This video about depression in women is a starting point in understanding what depression is and what can be done about it. Overcoming depression is not something you can do alone or overnight. Just like anything worthwhile, it takes time, effort and commitment.
What You Really Need to Know About Stress (1995, video). Stress is essential to our motivation and we are all confronted with different levels of stress during different periods in our lives. Too much stress, however, can cause illness. We all need to know how to manage the stresses in our lives.
